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16 hours ago, MomtoGiuliana said:

 Adrenal fatigue is a concept that is treated by alternative doctors but from what I understand mainstream medicine does not recognize it as a condition.

 

 

Constant stress is believed to cause adrenal fatigue and many websites dealing with the adrenals mention this as a condition. 

Yes, symptoms as stated. 

I have had adrenalin surges for ten years when my health nose-dived. I was getting sudden wakefulness, adrenalin surge, heart racing, dizziness and nausea. It would take a while for it to settle down each time. Then since I have had a pituitary tumour and I now have to have hydrocortisone as I am not producing the chemical to trigger adrenalin, I still get wakefulness but no adrenalin surge. It feels different and weird. I often wake up during dream-sleep or if I have been disturbed by a noise etc. I have read scholarly articles about wakefulness and sleep disorders in autonomic dysfunction. 

I did in, the past prior to a pit tumour, I had more wakefulness and adrenalin surges when I was anxious or stressed. I've found wearing wax earplugs has helped as small noises etc tend not to disturb my light sleeping as much. My cardiologist hasn't really responded to me mentioning this at all. 

Hi. I am sorry to hear that you are having so many problems. I am also sorry to hear that the docs are saying that you have anxiety and that is causing your symptoms. Neurologists said to me that it was all psychological. I know different now. To me, it sounds like autonomic dysfunction and could well be POTS. A tilt-table test is the only way to check this out. There could also be some mast cell issues as some of your symptoms suggest that this is the case. The breathlessness, tachycardia and gastroparesis are all linked to autonomic dysfunction. You don't necessarily pass out with POTS, only if you get Neurocardigenic syncope. 

My symptoms started after Glandular Fever and I was eventually diagnosed with ME/CFS. In more recent years I have been diagnosed with Ehlers-Danlos (The underlying disorder), POTS, neuropathy etc and may well have mast cell issues because of allergies and intolerances. They are all linked. I am often deficient in vitamin D. I get very breathless and cannot tolerate exercise etc very well. I have tried beta-blockers and Ivabradine (it upset my IBS) and I am now on Nebivolol to see if it helps with the flushing, fast heartbeat etc. 

So a tilt-table test would maybe help you and looking into other possibles as I have listed. Good luck, as I know it takes time to sort out. I also think some relaxation therapy like meditation can help a lot and not pushing too hard when trying to do tasks. I also suggest a warm, not hot, shower and then cooling the water at the end.  Maybe the cannabis is best left unless you are taking CBD. 
 

I agree the condition causes the anxiety. I read an article about this about five years ago saying the dysautonomia is a precursor to the anxiety. 

Doctors often come out with the psychological/anxiety stuff when they haven't got the answers. 

I have to do small tasks in bite-sized sessions and rest frequently. I'm a mess otherwise so have to be very careful. 

With actual exercise it's a slow build-up. The body can't take too much to begin with and over many months or even years to get the autonomic nervous system balanced again. Having said that it can vary so much from person to person. If mast cells are involved then exertion will make the body produce more histamine. 

I have EDS, POTS and Mast Cell Activation. All of the above symptoms and more. Hypermobility is EDS. I scored 7/9 on the Beighton Scale and I'm 57 now. Late diagnosis by the rheumatologist. 

The blog lifewithchiari is good to read. 

I think magnesium is pretty important stuff! 

Could an intolerance to medication be caused by mast cell activation? I have strong reactions to meds. Do you have allergies/intolerances? 

I've had migraine type headaches for years and they are, in my case, linked to my bowel. When my bowel is full or in spasm my head throbs. Latterly the migraines got worse and they were caused by a pituitary tumour. Once there was a bleed, I had a very severe headache and then it diminished and I have only had milder headaches since. 

I have had slight traces of blood in my urine for years and so far my GP's have not been that concerned. I only occasionally have a UTI and I really have no idea what causes it. 

On 01/10/2017 at 5:06 AM, yogini said:

HI, i am not sure I understand the numbers you posted. Blood pressure is usually a systolic over diastolic number like 120/80 or 90/60.

3

Systolic, diastolic and heart rate

On 29/09/2017 at 2:28 AM, Kristina said:

I have been reading up on mast cells and mast cell activation syndrome and it matches my symptoms. It took three months for things to get worse with the propranolol for me. How long were you on it if you don't mind me asking?

A few people here have mentioned ivabradine and flourinef so I will be reading up on those. Thank you!

Hi! I was on and off it over a three year period. 

I was on Propranolol and after a while it made me feel worse. I stopped taking it and started on Ivabradine. I was OK on this but stopped after a while as I got really sick and since I've been diagnosed with a pituitary tumour. The steroid for that has calmed some of my POTS  symptoms but started up another set. 

Propranolol made the Mast Cell and/or histamine issues worse. 

I bought mine off eBay, but you can get them on other sites. Mine has removable ice packs front and back. Yes, I have considered air conditioning but decided against it as the units are quite big and wouldn't fit very well in my cottage, also you have to vent it out of a window, which isn't always easy or convenient to do. 

Hello all! 

Hi. I am sorry to hear that you are having such problems. I have similar issues. I have autonomic dysfunction and peripheral neuropathy. I also have sweating issues. I overheat easily and also my limbs freeze in cold weather.  The worst of my symptoms came on 10 years ago and for the nerve pain, I take Gabapentin (Neurontin) and Nortriptyline. I also have a fast heart rate. 

In the summer, I use a tower fan, drink lots of iced water and the best thing ever is my cooling vest which is a vest with ice packs inside it. I love my vest and bought it online and it is used all summer to stop me overheating. In the winter my torso is a fiery furnace and my arms and legs have to have layers of clothes to keep warm. 

If you need any help or advice or even a chat message me on here. I wish you well as I know all this can be scary at times. 

(PS I also have EDS, POTS and MCAS)

I was referred to an immunologist. 

I am sorry to hear this. I hope you can get a doc sorted and you can ease yourself back into the exercise regime again. 

I took CBD and it didn't affect the POTS symptoms. 

What's 23 and Me testing? I have never heard of it over here in the UK. 

On 01/09/2017 at 11:07 PM, Chaos said:

I have definitely noted a correlation with worsening POTS symptoms during my spring and fall allergy seasons.  Treatment for MCAS  helped some but did not eliminate it.

Yes, it's about management and it doesn't fully eliminate MCAS/MCAD unfortunately. 

Could be Mast Cell related or histamine intolerance. 

Hi Sorry to hear about your plight. I had problems after Glandular Fever in 1984 and ten years ago it all got worse. I finally got diagnosed with EDS at the age of 53 and POTS at the age of 55. You're not alone as many people have a hard time getting a diagnosis and taken seriously. It is easy for doctors to say it is anxiety (psychological) when they don't have the answer. Ten years ago I was told it was the way I was thinking that had caused the whole body neuropathic pain and autonomic dysfunction. Of course I know that they were so WRONG! 

I educate everyone I speak to in the hospital and that will never stop. Many doctors have never heard about EDS and POTS and that is down to them not covering them at medical school. Don't give up.