Tenacity's Log

[Tenacity]

I decided rather than updating the numerous threads I've already made on the subject, each presuming a different reason for my problems, that I'd make this log and share my findings here.

Previous threads:

Is This Hyperthyroidism?
The Past Five Months Have Been Hell (Subacute Lymphocytic Thyroiditis?)
Postural Orthostatic Tachycardia Syndrome
Vitamin D - Healing My Skin And My Nervous System

Overview: 8 month history of paroxysmal panic attacks, anxiety, dissociation, orthostatic tachycardia, sleep disturbances and exaggerated sympathetic activity, without psychological trigger.

I'm currently being swallowed up in the NHS's waiting games. My most recent test was for urinary metanephrines, the results of which I'm hoping to hear about this week. It seems pheochromocytoma (pheo) is being considered as a potential cause of my issues.

Oddly, I had already considered pheo to be a potential cause, at the beginning of my disease, but dismissed it because I didn't have the headaches or sweating that are characteristic of it. I'd later find out not every pheo manifests in this way, and orthostatic tachycardia, which I do have, is present in over 60% of pheo patients.

Just recently I had come across a Reddit thread describing the sting of the Irukandji jellyfish and the resulting 'Irukandji syndrome.' Here is one particular symptom:

"One unusual symptom associated with the syndrome is a feeling of "impending doom". Patients have been reported as being so certain they are going to die, they beg their doctors to kill them to get it over with."

I have previously written about the death anxiety I have experienced during the course of this illness. I found interesting the overlap my condition has with this Irukandji syndrome. Lo and behold:

"The exact mechanism of action of the venom is unknown, but catecholamine excess may be an underlying mechanism in severe cases. Animal studies appear to confirm a relationship between envenoming and an increase in circulating noradrenaline and adrenaline."

It seems that the catecholamines are the hormones that make you fear for life, not just your own, but, as I experienced, for others as well. Pheo is a condition in which excess catecholamines circulate in your body, and that might explain the overlap in symptoms (although the Irukandji sting is more potent, no doubt).

So, up until yesterday I've been feeling fairly confident that pheochromocytoma is the answer, and that this week will be the beginning of my search for the tumour. As I should expect by now, though, it's not going to be straightforward - all of my previous assumptions have been wrong, why not this one? A new piece of evidence has come to light.

Throughout my illness I have experienced what I call 'sleep starts' - when I drift off to sleep, I am sometimes awakened with a 'start', with an accompanying adrenaline rush. Since taking vitamin D to correct a deficiency, two months ago, I stopped having incidences of this kind, but recently they have resurfaced and now I'm noticing the problem is occurring mid-sleep, too. It often disturbs my partner, because I 'gasp' for air. This can happen several times per night, or it can happen just the once, or not at all. The randomness of it is frustrating. I notice if I stay up very late, and am very tired, it won't happen. My partner asked me if I ever thought whether or not I have sleep apnea, as these episodes seem very similar. Given that I only started to notice this happening at the same time the rest of my symptoms began, I investigated the link between pheochromocytoma and sleep apnea. I found something potentially game-breaking: several studies indicating that sleep apnea itself can result in increased sympathetic nervous activity, and urinary metanephrine levels similar to that seen in pheochromocytoma. Here are a couple:

Obstructive Sleep Apnea Presenting as Pseudopheochromocytoma
The Importance of Exclusion of Obstructive Sleep Apnea During Screening for Adrenal Adenoma and Diagnosis of Pheochromocytoma

I guess it's just something to bear in mind. Given that sleep apnea is way more common than pheochromocytoma, and my past history of loud snoring and random sore throats, it's given me hope that something less serious and more easily managed is the source of all of my issues. I've yet to come across the idea that pheochromocytoma can cause sleep apnea, either.

Time will tell. My symptoms on the whole have decreased ever since they began in August, although I have read that you can become desensitised to a constant excess of these hormones.

It's going to be a busy month. I'm going to get my vitamin D levels retested, I need to do another 24-hour ambulatory monitoring session, and I'm going to investigate this sleep apnea further.

 

[Tenacity]

I heard back about the urine tests results today. All fine, apparently. So it's looking not to be a pheochromocytoma. Unless it's entirely down to sleep apnea, not really sure which avenues to pursue now.

 

[Mad]

I heard back about the urine tests results today. All fine, apparently. So it's looking not to be a pheochromocytoma. Unless it's entirely down to sleep apnea, not really sure which avenues to pursue now.

Hi tenacity,
Sorry about the issues you're experiencing.
I just wanted to check in and see if you are still taking the 8,000 iu vitamin d daily and if your acne is still totally cleared?
After reading your post on that about a month ago, I subconsciously picked up my bottle of vitamin d and started supplementing again and for about a week I had ENTIRELY clear skin. This has not happened for me in 7 years. I was amazed. I've had about 3 smaller spots show up since then but not too bad, and considering upping my dosage. Just wanted to check in on you.

 

[Tenacity]

Hi tenacity,
Sorry about the issues you're experiencing.
I just wanted to check in and see if you are still taking the 8,000 iu vitamin d daily and if your acne is still totally cleared?
After reading your post on that about a month ago, I subconsciously picked up my bottle of vitamin d and started supplementing again and for about a week I had ENTIRELY clear skin. This has not happened for me in 7 years. I was amazed. I've had about 3 smaller spots show up since then but not too bad, and considering upping my dosage. Just wanted to check in on you.

Hi Mad!

I stopped taking 8000 IU daily once my bottle of vitamin D ran out. I'm waiting to have my blood levels tested again before deciding to take more. The skin on my face is currently completely clear. It seemed to heal my back initially, but rebounded back to its former state. I suspect my face and my back are suffering from separate pathologies.

I've got a bottle of Carlson's Liquid D3, 2000 IU per drop on standby just in case I want to keep using it. I notice that if I go too long without using it, my facial acne will return slightly, but a single drop is enough to keep it at bay for now.

@Amazoniac made an interesting post about vitamin D activity being saturated at 2000 IU, so if I continue using it in the future I'm going to err on the side of caution and use a lower dose, at least until I've done more reading on the subject.

Thanks for checking in.

 

[Mad]

Hi Mad!

I stopped taking 8000 IU daily once my bottle of vitamin D ran out. I'm waiting to have my blood levels tested again before deciding to take more. The skin on my face is currently completely clear. It seemed to heal my back initially, but rebounded back to its former state. I suspect my face and my back are suffering from separate pathologies.

I've got a bottle of Carlson's Liquid D3, 2000 IU per drop on standby just in case I want to keep using it. I notice that if I go too long without using it, my facial acne will return slightly, but a single drop is enough to keep it at bay for now.

@Amazoniac made an interesting post about vitamin D activity being saturated at 2000 IU, so if I continue using it in the future I'm going to err on the side of caution and use a lower dose, at least until I've done more reading on the subject.

Thanks for checking in.

Interesting, yeah I'm wary about taking huge doses of any supplement, but of course it wouldn't be the first time I've tried something excessive in the name of health! There's just so much talk of vitamin d around here that it's got me thinking.
Thanks for the response :)

 

[Tenacity]

I had my vitamin D levels retested.

It went from 8 ng/ml to 58.4 ng/ml in 2 months of supplementation at 8000 IU daily - and that was after a few weeks of not taking any supplement. I think the reference range used by my GP (here in the UK) is 48 ng/ml as the upper limit. My doctor called me up concerned, saying I was overdosing and approaching toxicity, yet Peat and the Vitamin D Council would say I'm at the higher end of the optimal range.

I'm honestly surprised at that large a jump (although maybe I shouldn't be, as that's what the Vitamin D Council said would happen). I wonder if it's worth getting calcitrol and calcium checked out.

Symptoms wax and wane, but on the whole I'm slowly getting better.

 

[Tenacity]

The woman this graph is referencing had normal vitamin D levels but subnormal calcitrol levels, a metabolite of vitamin D. So my good test results aren't strictly an indication that this isn't my issue. We'll see.

 

[Tenacity]

I've been looking into the causes of POTS for a while now, and some research is indicating it might be an 'autoimmune disease'. So I decided to listen to Danny Roddy's Generative Energy podcast episode on autoimmune diseases.



There are a few things that caught my eye in this episode:
1) That autoimmune diseases have a female predominance. So does POTS.
2) That liver disease is highly correlated with autoimmune disease. POTS isn't currently treated as an autoimmune disease, to my knowledge, so I doubt there are studies showing a correlation between liver disease and POTS. So I did the next best thing - I went to dinet.org to see if members reported anything. 'Lo and behold':

For the latter image, I believe Haidut said that hepatitis was itself an autoimmune condition.

3) The use of niacinamide in autoimmune disease. Peat told me that niacinamide helped some people with their orthostatic tachycardia. I originally thought this was by restoring energy production in the veins, allowing them to contract rather than relax, but perhaps in some instances it's by this effect on the immune system.

As usual, the 'sickness field' of hormones, estrogen, cortisol, serotonin, etc. are implicated in the etiology of autoimmune condition. I've been a sickly person my entire life, and other than neonatal and adolescent use of iron supplementation, I don't know why that might be.

I'm going to get my prolactin, cortisol, androgens, PTH, calcitrol, calcium phosphate, AST, ferritin and transferrin checked, then decide on any necessary treatments.

 

[Tenacity]

It's now nearly a year since I got sick.

I've made little progress since my last post. By and large, my symptoms are still slowly improving, particularly those centered around anxiety. I now feel only slight anxiety during the night, although my insomnia is much worse. I can only sleep after about 3 AM now. If I try and sleep at a normal time, I'll be woken up with adrenaline jolts just before drifting off. I never feel sleepy anymore. I only sleep because I know I should. Oddly, once I'm asleep I sleep as soundly as ever.

The tachycardia isn't any better. I'm still quite fatigued in my day to day life. The dissociation is getting better.

Investigations through the NHS are ongoing, but I've hit a slight bump in the road. My consultant said that I was going to complete a 24-hour heart monitor, a 48-hour urine test, an echocardiogram and a tilt table test. The first three tests revealed no abnormalities (to my knowledge). After the echocardiogram, my consultant decided to cease all investigations, even though a tilt table test is the gold standard for diagnosing POTs. To say I was annoyed is putting it mildly. This is slowing the rate at which I can learn more about myself. The last engagement I have had with the NHS was in June. I feel little has been done since enlisting their help all that time ago, in February.

Aside from that, I've been trying to piece together parts of the puzzle on my own. Largely, it's been reading through whatever PubMed studies I can find on the topic. I'm not really coming across any new information that I haven't already acquired yet - this seems to be a young field and most published work just echoes earlier work. I've yet to figure out why this has happened, only that estrogen is involved, somehow.

I mentioned that I was getting blood work done in my last post. My prolactin is elevated, at 14.6 ng/mL. My waking cortisol is on the high end of the normal range. My testosterone is in the middle of the normal range, although I've read it's actually below the median level. I've yet to have a calcitriol test, I'm still waiting to see if I can get it on the NHS. The iron tests were largely fine, iron saturation is good, blood iron level is normal, but my ferritin is slightly under the normal range.

I've been in contact with Ray, asking him questions that might elucidate the nature of my problem. He suggested that thyroid and progesterone could help with my condition. As far as I can tell my thyroid function is fine. Figuring I had nothing left to lose, I decided to try some progesterone. I've tried both physiological doses and doses up to about 50mg, but it seems to have no effect. One notable thing is that I haven't had a heart palpitation since trying progesterone, so that's encouraging. I'm yet to work up to the dose Peat said he used for a migraine, but I'm trying to learn more about the nature of progesterone before doing that.

To finish, today a blood vessel in my eye ruptured for no perceptible reason. It's only a small rupture. It makes me wonder about my blood pressure, and the sensations of pressure I sometimes get behind my eye. What if my dissociation is strictly a physical problem with my eyes and not a mental issue? It's tough to say.

I feel like everything's falling apart, but I haven't given up. There's still more to try and more to learn. I think I'm going to go back to the root and study more about what it is that makes a person healthy, in more depth, alongside continuing to read the literature on this condition. It's tough when you lack the energy and have to juggle earning a living and a relationship on top, but it's the most I can do at the moment.

 

[SB4]

@Tenacity If it makes you feel any better, I had a positive TTT and the treatment options so far have been poor. They gave me compression stockings, ivabridine, and a different beta blocker to try (I was already on one) and when these didn't help they shrugged there shoulders. I also got virus testing which came back negative.

Luckly I kept pushing and got to see the main department in london which I'm going to again next week. It's been a whole year between appointments. So we will see if it bares any fruit.

You can do the TTT at home if you have a heart rate monitor.

 

[Tenacity]

@SB4 Yeah, I'm only really interested in the diagnosis for social reasons - my family don't seem to believe in my sickness. I don't plan on taking any medication, but I may try the compression stockings if they recommend them. I want to see if I can get more tests done to find out more about my particular situation, but I know there's only so much they can do.

I've done a poor man's TTT several times, and my HR always increases by 30 or more.

What main department in London is this?

 

[SB4]

@Tenacity I understand. As for the compression stockings, some find them useful but for me the effort it takes to get them on is not worth it. Especially when your not supposed to have them on when sitting down, which is what I spend most of my time doing.

I think its called UCLH or something, it specialises in neurological conditions I think. It's the main place for POTS in all of Europe. When I was doing my TTT there I had doctors from Italy sit on so they could learn about it and then bring that info back to there country.

I got there by being awkward and I guess luck. I was originally seen by the POTS department in sheffield (where I live) where I covered both diagnostic criteria for POTS on the TTT. The Sheffield doctor who hadn't ever met me then dx me with anxiety and hyperventilation and I didn't even get to see him, only nurses. I was very badly at the time and was practically begging the nursers to do something, anything, as my heart pounding was almost unbearable. I even ordered tests myself and tried to get them to treat me based on the results but nada.

After being awkward to them I was allowed to see the main doc who just told me it was anxiety, even though I sternly disagreed. I eventually then got a 2nd opinion in London who said I do have POTS (thank christ) that wasn't caused by anxiety (hurrah!) but instead deconditioning (oh f*ck!), which I strongly disagree with.

Anyway, I see this london doc for the first time since my dx next week. The time since I applied for the second opinion and this appointment is 1.5 years. Things move very slow on the NHS as I suspect you are painfully aware.

 

[Tenacity]

@SB4 Do you have any symptoms other than cardiac symptoms?

 

[Dolomite]

That is disappointing your family isn't very supportive.

I don't have POTS but I have had a lot of adrenalin waking me at night no matter what and when and how much I ate. I do have low blood pressure most of the time. But ever since I have been using Magnoil I have been more relaxed in general and wake less often. You should try it if you are unable to get any nhs medical help. It is by far the best magnesium supplement I have ever used.

 

[Tenacity]

That is disappointing your family isn't very supportive.

I don't have POTS but I have had a lot of adrenalin waking me at night no matter what and when and how much I ate. I do have low blood pressure most of the time. But ever since I have been using Magnoil I have been more relaxed in general and wake less often. You should try it if you are unable to get any nhs medical help. It is by far the best magnesium supplement I have ever used.

I was thinking about trying a mangeisum supplement, actually. Peat says orthostatic tachycardia is caused by lax smooth muscle in the walls of the leg veins, and magnesium is one of the things that tones the muscles up. Thank you for the recommendation. At this rate if my sleep issues don't change I'll be spending this winter in perpetual darkness.

 

[SB4]

@Tenacity No, it's just that cardiac are my main symptoms. Other symptoms include, gastroparesis, instant lactic acid build up upon even very mild exertion, wired but tired (feel like I can never relax), dry mouth, poor sleep, and lots of other more minor symptoms.

 

[Tenacity]

@SB4 How did your appointment in London go?

------------------------------------------

I think my symptoms have reached a plateau in progression, at least until recently. They weren't getting any better or worse. About a month ago I accidentally damaged the gum by my tooth trying to dislodge a grain of rice, resulting in a large swelling. I thought it was an infection at first, and as soon as that thought came to me I experienced another episode of panic, resulting in a very high heart rate, which I hadn't had for quite some time. It made me realise that my own psychological state could exacerbate the likelihood of panic occurring, which I largely dismissed before. Fortunately, it wasn't a very strong episode. It makes me wonder if a large part of my symptoms improving was a result of finding out what my condition actually was, rather than it being a big unknown. What I need to figure out is how to reduce this excessive sympathetic activity.

I've done a lot of experimentation these past two months, the biggest being taking progesterone, specifically Progest-E. Unfortunately, I did not perceive any noticeable effect - no temperature increase, no feelings of sedation, etc, even up to 100mg (which resulted in nausea, presumably from the vitamin E). This seems to indicate estrogen overload, but I don't know what the source of this may be. My best guess is the liver, due to past episodes of hypoglycemia and a poor ability to go for long without a meal, but I'm not certain. The other alternative I'm aware of is thyroid dysfunction, but I have little reason to think I'm hypothyroid. I regularly have temperatures above 98, and my heart rate reaches the high 70s / low 80s after a meal. Perhaps there's just so much estrogen locked in my cells from my days before discovering Peat and getting invested in health.

I'm still taking progesterone, but only a small amount each day, about 15mg in the evening. I've also begun taking niacinamide again, hoping to do so longer term. I stopped taking it because I didn't notice any pronounced effect on my tachycardia, but maybe I was a bit hasty in discontinuing it. I notice that it restores warmth to my hands. Finally, I'm also taking 400 IU of vitamin E every other day, because I noticed that's the one thing that actually reduces my tachycardia, besides sleep deprivation. I still don't know the mechanism.

In terms of diet, I've begun eating a high quality liver product, drinking freshly squeezed OJ rather than UHT, and eating more salt so that I'm getting at least 3.5g of sodium a day.

Recently, I've noticed that I'm feeling much more fatigued than I usually would. I don't know what this means yet. Supposedly, symptoms of POTS get worse in October, a phenomenon called 'October slide.' Part of me wonders if it's due to lowering stress through all these dietary changes and supplements, but I fear that's wishful thinking.

------------------------------------------

Separate from my own personal experiences, I've begun a more dedicated review of the literature about POTS. So far I've managed to collate every free to access study about POTS on Pubmed, and plan to go through them slowly. I'll post here if I manage to come up with anything through doing this. I'm very curious about the role of CO2, nitric oxide and norepinephrine transporter malfunction on this condition. There are a few studies relating to those things. I'm looking into this along with immersing myself in other physiological materials, including Peat, so that I can determine the meaning of POTS from a bioenergetic framework.

 

[SB4]

Thanks for asking Tenacity. It was pretty useless. I am very disappointed in the service. In fairness it was 45mins long, which is the longest appointment I have ever had with a doctor, however I wasn't speaking to the main doctor I am under (whom I have seen only once), I was speaking to one of his team.

I spent a while in the appointment trying to argue my case for an upright MRI with flexion and extention. She dismissed the idea on the grounds that the team did not see anything in my tests to indicate spinal problems. I rubutted this by politely saying you cannot rule out CCI based on a tilt table test. You need a very specific test. To this she replied that it's pointless seeking other diagnosis since I already have a dx of POTS. I replied that POTS is idiopathic and such there is no known treatment, CCI has a cause and a treatment that could potentially remove all my symptoms. To this she replied, the team did not see anything indicating a spinal problem. I could see at this point she had decided that because she was a doctor and had never heard of this and I was a mere patient that it should be instantly dismissed.

Here is the kicker though. I wouldn't be too bothered if she had said "we don't think it's that, we are going to try this instead. However they offered me absolutely NOTHING going forward. This is supposedly the top POTS place in Europe and they offer me NOTHING in the way of treatment or further diagnosis after waiting 1.5yrs for this appointment. My respect for the medical serivces in britan has found a new low.

Most of the rest of the appointment I spent emphasizing how many doctors had decided it was all in my head in the 6yrs before receiving a dx and how I strongly believe I don't have any psychological problems contributing to my symptoms. She seemed to agree, and said she would consult with the team on how to proceed going forward.

A month later I get a letter through the mail with 3 suggestions moving forwards. 1) carry on seeing the CFS team in sheffield. This is a nothing suggestion as I was doing that anyway and as I explained in the appointment they are completely out of ideas. So a useless suggestion. 2) Make another appointment with the useless POTS doctor in sheffield who dx without seeing me, and in the 2 times I have seen him since has insisted I have anxiety. Other than that he has no treatment options for me. Another useless suggestion. 3) Make an appointment with a neuropsychiatric team. This after me insisting I need physical tests and treatments for a physical disease, and her seeming to agree in the appointment. Useless suggestion. So absolutely nothing. They said they would see me again in 6months time. The actual time to next appoinment with them is 10 months. So almost a year.

Sorry about all that, I will /rant now.

Do you browse/post on the phoenixrising forum? There are a lot of knowledgable people with POTS over there. Did you read up on the POTS conference that was held about a month or 2 ago? Lots of interesting research going on there.

 

[Tenacity]

@SB4 Thanks for sharing. That sounds very frustrating, especially since they're said to be the best of the best. The low quality of care in the UK is a large part of why I've not seen any doctors since the beginning of the summer. My cardiologist essentially ghosted me. What are you doing / going to do for POTS now?

I've had a few looks at PR but nothing in depth. Thanks for the heads up. I hadn't heard about the conference. I'll add it to my list of resources.

Oh, and what is CCI? A Google search only brought up a list of companies.

 

[SB4]

Right now I am working on methylation again. Last time I tried this I suspect it massively accelerated my tailspin into the worst I have ever been 2 years ago. This time I have come out it differently, with more understanding, and I am having significant, if a little tentative, success. I need to stabilize this success before I post about it but it is very promising.

There is a guy called Cort who writes about the latest research in CFS on a blog.
Here are some from that conference. Some interesting leads in there:
The Case for IVIG Treatment in Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Small Fiber Neuropathy, and POTS : IVIG#3 - Health Rising
Taking a Stand: Fibromyalgia, Orthostatic Intolerance and the Autonomic Nervous System - Health Rising
Stagnant Hypoxia - Where Chronic Fatigue Syndrome and Hyperadrenergic POTS Meet? - Health Rising
Wired to the Gills: The Hyperadrenergic POTS Group - The Dysautonomia International Conference #V - Health Rising
"Sticky Blood" - Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome and Fibromyalgia - The Dysautonomia Conference #4 - Health Rising
Are Chronic Fatigue Syndrome, POTS and Fibromyalgia Autoimmune Dysautonomias? IVIG #2 - Health Rising
An IVIG Chronic Fatigue Syndrome (ME/CFS) / POTS Treatment Success Story: IVIG#1 - Health Rising

I have copied pasted these in the wrong order so you might want to start from the bottom, if you have time to read them of course.

CCI is cranial cervical instability. It is basically a problem with the position of the cervical spine which of course can damage / pinch the autonomic nerves that leave the brain. Similar conditions are Chiari, which is pressure on the brain stem causing problems, and IIH, Idiopathic intracranial hypotention. I highly recomend you read through this thread Have you ruled out Chiari as a cause of your CFS

I suspect there is a 10-20% chance this could be causing my symptoms. If you are thinking that you doubt that this is the case in you as your illness started with a virus (did it?) like me then, I post quite far along in the thread how a virus or even Ehlers Danlos Syndrome can cause it as opposed to whip lash, etc.