TCP

Meditation is great. It's worth looking into. 

Kris4444

Many people seem to have problems triggered by EBV. It's a tricky one. Some people recover fine and others like us have issues. I'm sure it triggered the chronic fatigue and autonomic issues that got worse. 

I've had haemorrhage splinters in my nails for 32 years and the ridging started when the POTS?autonomic dysfunction and neuropathy came on. My hair has also thinned considerably. I now supplement as much as possible to help. 

This is a lot of info on MCAS, but I've looked mainly into the low histamine/oxalic acid foods. They are listed on low histamine chef. I also take the supplements suggested there. 

I only can tolerate 2.5mgs of Ivabradine, any higher and they upset my gut. I'm hoping to eventually be able to be meds-free, as I don't tolerate them very well and give me many other health issues. Take advice though, but doctors only dish these things out and they don't always help. 

I get red blood pooling in hands, legs, feet, boobs, upper arms. It makes the neuropathic pain much worse. 

Hi. I was diagnosed with ME back in 1984. I have been diagnosed with EDS and POTS this past couple of years. I believe I had autonomic dysfunction after EBV. I think chronic fatigue is a feature of autonomic dysfunction/POTS and EDS. I have since realised that I may well have Mast Cell Activation after the EBV and it has triggered all of the nervous system disorders, such as autonomic dysfunction.POTS, gastroparesis, IBS, allergies, intolerances, neuropathic pain etc. 

I am on a very low dose of Ivabradine and also I am coming off Nortriptyline. I wonder if the Gabapentin is actually still working. 

Anxiety is part of this condition. When I say condition, I mean MCAS. Many people with POTS and/or EDS have it. 

You sound pretty similar to me. I am 55 and only got a diagnosis of EDS and POTS this last couple of years and that's only because I did my own research and pushed for a diagnosis. I haven't been able to pursue a proper diagnosis of my neuropathic pain as the neurologists aren't interested. It takes on average 10 years to get a dx for MCAS. I am pretty sure my own doctors won't beleive in it if I suggest it to them, I am however writing to them about my research and steps to alleviate the issue with diet and supplementation and will ask for it to go on my medical file. 

I don't know about the situation in the US, but I think it is a tricky one to diagnose. Good luck! 

On 3/11/2016 at 4:34 PM, Sylvie33 said:

Hi TCP and Kris,

I did some searching and learned beta-blockers can block the effects of an epi-pen in case of anaphylaxis.  I also learned mast cells emit serotonin....which is why anything that behaves like an SSRI can aggregate deregulation  (at best) or trigger serotonin syndrome at worst.

All my troubles with dysautonomia  began with a serotonin syndrome crisis in Nov. 2014...complete with anaphylaxis. I had full-blown dysautonomia by last April.  Now DX with neurocardiogenic syncope, POTs, and autonomic and sensory small fiber neuropathy. AND I'm still depressed, but on a baby dose of nortripyline....not terribly effective....and it gives me tachycardia to boot.

So I am wondering about MCAS testing.....I might start a thread...for it would take an out of state trip, which I can't imagine right now!  I'm wondering if I should just do what you are doing...but I really would like a good treatment plan....especially since the propanalol is helpful (though I'm very disabled).

Difficult enough to get my dysautonomia DX....no one in all of NYC tests for MCAS. I know Anne Maitland did, but she's no longer taking patients.....

So hard to figure this all out....

 

Sylvie

 

Hi

Sorry for delay in getting back to you. I had health issues for years after EBV gave me Glandular Fever. Then in 2007 everything went wrong suddenly resulting in autonomic dysfunction, POTS, neuropathy etc. I know it was MCAS/MCAD now as the symptoms have evolved and changed. The intolerances and issues have worsened and now it all makes sense. I don't think there is much chance of my doctors pursuing this diagnosis as they most likely won't even have heard of it. This is the path 'low histamine chef', took http://thelowhistaminechef.com/diagnosing-histamine-disorders/

MCAS will make you depressed and many other health issues. I have or have most of these http://thelowhistaminechef.com/histamine-intolerance-symptoms/

The Propranolol made me much worse and the second time last year I was on it everything went haywire. I am glad I found out what is going on and can work on my diet to make sure that I am doing the best thing for my body. Dr Diana Driscoll has also done a lot of research on MCAS. 

Take care and I hope you find some relief.

TC 

 

 

---Sylvie

On 3/11/2016 at 4:34 PM, Sylvie33 said:

Hi TCP and Kris,

I did some searching and learned beta-blockers can block the effects of an epi-pen in case of anaphylaxis.  I also learned mast cells emit serotonin....which is why anything that behaves like an SSRI can aggregate deregulation  (at best) or trigger serotonin syndrome at worst.

All my troubles with dysautonomia  began with a serotonin syndrome crisis in Nov. 2014...complete with anaphylaxis. I had full-blown dysautonomia by last April.  Now DX with neurocardiogenic syncope, POTs, and autonomic and sensory small fiber neuropathy. AND I'm still depressed, but on a baby dose of nortripyline....not terribly effective....and it gives me tachycardia to boot.

So I am wondering about MCAS testing.....I might start a thread...for it would take an out of state trip, which I can't imagine right now!  I'm wondering if I should just do what you are doing...but I really would like a good treatment plan....especially since the propanalol is helpful (though I'm very disabled).

Difficult enough to get my dysautonomia DX....no one in all of NYC tests for MCAS. I know Anne Maitland did, but she's no longer taking patients.....

So hard to figure this all out....

 

Sylvie

 

Hi Sylvie. I read this with great interest. I have EDS, POTS, NCS and autonomic and small fibre neuropathy. I've been on Nortriptyline since 2007 and I am now weaning myself off it. I didn't find the Propranolol any good and it made the tachycardia, flushing and BP levels much worse. I've tried it twice, the first time for a few years. I am now on a baby dose of 2.5mgs per day of Ivabradine, I cannot tolerate more as it upsets my bowel. I am also very disabled with everything going on. 
 

I think it's hard to get a dx of MCAS/MCAD over here and I doubt I will get referred anywhere. I knew I was getting much worse with foods and drugs. I found all the high histamine foods gave me most issues. I am now on the low histamine/inflammatory diet which is higher in oxalates and is supplemented with appropriate non-drug support. It's worth looking into Histamine Intolerance and Vagus Nerve issues. Low Histamine Chef and Dr Diana Driscoll looks into these in great depth and explain what is happening and what you can do for yourself. Even my cardiologist says what I can do for myself is better than what the drugs can or cannot do. Since being on the diet I am flushing up less and bowel is less problematic. I hope it improves further. This to me is a treatment plan and requires no drugs which I may have issues with and may cause other problems. 

I hope you get some help. 

TC

 

 

 

Apparently from various pieces I have read Propranolol and other beta-blockers can trigger it or make it worse. Tricyclic antidepressants and Gabapentin have also been mentioned as adding to the problem. I will see if I can find the links later on. 

Even if you don't test positive for POTS is still may indicate autonomic dysfunction, especially if you have tachycardia, gastroparesis, IBS, BP and other issues. 

Hi. I don't know whether it's related to your issues, but I had Epstein Barr virus many years ago and it triggered the fatigue and autonomic issues (diagnosed as ME/CFS some years later). In more recent years, I have developed POTS (as well as being diagnosed with EDS III). I was getting more and more food and drug intolerances and I started to link it with Mast Cell Activation and or Histamine Intolerance. I score high for reactions to higher histamine foods and now I am on low histamine/inflammatory diet and supplement regime. My intolerance to exercise is still there and it hasn't helped me at all. I have also been on Propranolol, and am still on Gabapentin and Nortriptyline which have all been implicated in Mast Cell Activation. The Autonomic Dysfunction including tachycardia and gastroparesis etc have worsened as has the autonomic neuropathy in the last 8-9 years, and changing diet and using supplements seems the only way for me to go. I doubt I will pursue a diagnosis of MCAS/MCAD as it's quite tricky to get that diagnosis. 


TC

Are you seeing a cardiologist?I used to have a low HR when POTS first flared up and now it's much higher. 

Thanks for posting these Katybug and your experience. I had ruled out mast cell issues and allergies as an underlying cause or contributor because of my lack of classic allergy symptoms, this has made me rethink.

Hi barb10. I know that this is an old post, but I picked up on it today as I am still looking into MCAD/MCAS and histamine intolerance. I am having more issues with food and so many other symptoms. I tried taking H1 and H2 and felt awful, so I am now taking a more natural approach with more supplements. My diet has already been changed to a low histamine one.

I've not had a diagnosis of MCAS/MCAD or Histamine Intolerance, but my reactions to foods are getting much worse. I have EDS and POTS. I started to look into H1 and H2 and decided to try them for two weeks and maybe then go onto more natural supplements. I have only taken them for three days I feel very unwell, achey and fluey. My gut is upset. I will now try the Quercetin +C and various other recommended supplements. I am already on the low histamine diet. I will see how I go.

Hi. I've been exercising for months now. I started back on Ivabradine again in July. My gut doesn't like it and it makes me tired and my cognitive function has worsened. I couldn't increase dose from 2.5mgs as my gut got worse. My cardiologist put me back on Propranolol at 20mgs per day to help with palpitations. These have also made my gut worse, flushing, fatigue and poor cognition. I've decided to come off both over the next month or so as I don't feel the benefits of either and they are making me feel much more unwell.

Has anyone else have to stop there POTS meds because of side-effects and also did this have effect on exercise regimes?

I never had nail problems until 2005 and the first vertical ridge appeared. If I am unwell I get horizontal lines. I get more ridges and splits and my nails are flattening out at the tips instead of being curved. From what I've read having a connective tissue disorder causes malformed nails. Supplements have helped mine.

I have EDS. POTS and Neuropathy. I was originally diagnosed with 1992 after living with 'ME' symptoms for 8 years. Since then the other more recent diagnoses have altered the situation. I have had to claim benefits because of the severity of my symptoms. Explain all of your symptoms and how they effect your ability or inability to do the set descriptors. I found the following chart very useful as it's all about point scoring.

https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

Yes, exactly. It depends what co-existing conditions you have with it. Having nerve inflammation for me means no weight bearing exercises as it damages the nerves and no stretching as it stretches the tendons/ligaments with EDS. I loved walking when I was younger but it's very painful for me now. I also liked to swim and I can't easily get to a pool regularly. I also liked yoga when I tried it but many of the exercises are stretches.

My neuropathy adviser says swimming, tai chi, recumbent bike etc are very good. The cardiologist's advise more aerobic exercises to pump the blood and stop it from pooling. The idea is to make the leg muscles work harder to get the blood flowing properly. In EDS the idea is to strengthen ligaments without stretching. It's finding a happy balance for you and what makes you feel OK if not better.

I am getting calf muscles, so something is happening!

Thanks everyone for your replies. They are much appreciated.

I have two recumbent bikes. The cheapest one I bought (my sister has it) was around £20.00. So they aren't too expensive.

My POTS/autonomic dysfunction came on immediately after glandular fever in 1984 and again worsening in 2007. I wasn't deconditioned prior to that as I was busy working in 1984 when that struck harder in 2007, I was the healthiest I had been in a couple of decades. The exercise is supposed to pump the blood back up into the torso and head and not let it pool in the limbs, that's why the lower legs are worked on.

I am mindful of not doing any weight bearing exercise because it can make the nerve damage worse, so too much walking etc is not good for me with the nerve inflammations and as yet my knees and ankles are very painful and my walking pretty poor (I use a stick for walking). I also must not stretch the ligaments because of EDS, so a lot of yoga is out. I used to like yoga. I can do some resistance and weights, though. I shall continue, as I hope in the longer term it will help. I am occasionally adding some weights but as yet my joints don't like it! I would like to swim but I live out in the sticks with no car so it costs way too much to get into the local town to swim.

I note that with exertion my heart goes bananas and I do hope that this improves.

Thanks for your help and encouragement to continue. I won't give up!

Yes, I was diagnosed years ago with ME/CFS and in recent years I started to wonder if there was more to it. I believed that I had POTS and EDS III after much research and my GP referred me to a cardiologist and rheumatologist. The rheumatologist said after an hour long examination and looking into my health background decided that I had 'Ehlers-Danlos Syndrome Hypermobility Type'. I was very happy about this as I'd had knee dislocations in years gone by, loose joints, IBS and autonomic issues. It obviously took longer for the POTS diagnosis to come.

Doctors generally want test results and won't look into symptom history. They should listen to their patients and not rely solely on one test after another.

His. I am currently doing an hour a day on a recumbent bike. I do it leisurely. In 4-5 months of exercising, I haven't felt any different. No improvement of symptoms. I am either doing something wrong or it's not working for me?

I drink 3.5 ltrs of water a day. I cannot use compression garments as they hurt the nerves and make my legs freeze.

Confusion does abound over tilt table results.

The first one I had I was told that I had POTS and Vasovagal Syncope/NCS after the test, but the consultant who reviewed the results said that I hadn't got either!
The second one I was told I definitely had POTS as a rise of 37 bpm. The same consultant didn't seem totally convinced as there was no NCS, but luckily MY cardiologist said he had no doubt that I had. He is a well trained Cardio and Electrophysiologist.

It's down to training and doctors having faith and confidence in diagnoses.

The worst of my POTS symptoms came on with neuropathic pain. This was eight years ago now and I have tingling, burning and some numbness. Although this hasn't been diagnosed as small fibre neuropathy, the link is that autonomic dysfunction can also lead to nerve sensations in the legs, feet, hands and arms. I also have it in my torso and head. This doesn't mean to say that this will spread in your case. Everyone is different.

I also have EDS and many people with EDS also have POTS and neuropathic pain. Many have had skin biopsies which show small fibre neuropathy. Ordinary EMG/nerve conduction tests do not show SFN.

Have you been tested for diabetes? Vitamin D and B12 deficiencies can also bring on neuropathic pain, blood tests can show if this is the problem. Lyme Disease from tick bites can also cause some neuropathic pain. Lots of potential causes. These need to be considered.

I hope you can find some relief from this. I consult a neuropathy doctor and he advises changes in diet and exercise.

All the best

I am sorry to hear about your daughter's nerve pain.

My neuropathy came on 8 years ago. I have it all over my body. I have also found out that apart from POTS I have Ehlers-Danlos Syndrome. It took 54 years to get both of these diagnoses. I am hoping to get the neuropathy diagnosed. I think it may be small fibre neuropathy which ties in with the other two conditions. There is also neuropathic POTS to be considered, also Lyme's disease, Diabetes etc. You don't have to have stretchy skin to have EDS, I don't.

I have had an EMG but some nerve damage showed but it won't show small fibre nerve damage you have to have a skin biopsy for that.

I am taking alpha lipoic acid/acetyl-l-carnitine, D and E Vitamins, B vitamins, calcium, magnesium etc to help with the nerves, exercising, using an EMS/TENS, changing my diet etc does help. I eat vegan, no sugar, gluten, dairy or processed foods. Gluten damages nerves and dairy causes inflammation in the body.

I wish her well and hope she finds some relief. Getting to the bottom of what's causing it can help, if that is treatable, otherwise it's about management. I take Gabapentin and Nortriptyline for this nerve pain.