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I'm afraid I haven't been able to work for some time and now don't socialise at all. The only time I leave the house is to go to the doctors or hospital appointments. Sad but true. I haven't had any proper treatment for the autonomic dysfunction and therefore haven't really picked up. I am trying to get the funds together to go to London and see a specialist.

I didn't think mine were anxiety-related at the time but after speaking to an expert in sleep disorders and 5 neurologists, I realised that they could well be. Your mind is a huge thing and is part of our body. Having studied for a degree in psychology, I realise what the mind can do to the body and vice versa. We all have anxiety and stress in different levels. Don't forget, anyone with POTS/autonomic dysfunction has nerve damage and that means our responses to internal and external forces, too will be heightened. What would be normal everyday bodily reactions to a healthy person will be heavily exaggerated in someone with nerve damage and inflammation. We are more jumpy and our bodies react strongly to events in our lives, such as what we do, think and what happens to us. We also emotionally maybe have changed as our bodies have changed and we get frustrated, upset and angry and this will impact on our nervous systems. I know my health improves when I am calmer through self-hypnosis or meditation and if I am going through a bad patch my sleep gets worse as do the jerks. At the time mine kicked off I was having a a really tough time and I knew my mind was having a huge role in the problem. The calmer I got the more they abated. I should also add that many people with ME/CFS and Fibromyalgia gets these jerks. As long as epilepsy and other conditions are ruled out I wouldn't worry too much. I had mine very bad for two years 2007-9 and now rarely get them.

The jerks I experienced when the autonomic dysfunction kicked in were extreme. My legs and arms would lash out and even my head. I was also experiencing these symptoms day and night. During the day my legs would shoot up in the air or my fingers would flick up. I also had repetitive head jerking at night and bite my tongue. Epilepsy was ruled out. All of these flair up when I am anxious and have certainly abated since 2007. I found that when I understood that they were benign I relaxed more. I was sent to casualty 7 times in one month when my BP crashed and I had two week long stays. One girl I was next too had extreme jerking and leg and head thrashing. Hers were caused by anxiety/stress.

Yes, you are right about the poor services and treatment. The psychiatrists have got ME/CFS firmly in their grasp and only offer CBT and GET as possible treatments under the NICE/NHS guidelines and to date I know of no one who has actually been referred for such 'treatment'. At least some good studies have been completed and others ongoing. Their has finally been a pot of over a million pounds put forward by the Medical Research Council to look into the condition. I am looking forward to the day when the evidence is so overwhelming that the psychs have to back off.

Thanks, Chaos for all of that information. To me it makes perfect sense as viruses can hide in the body and stay activated or lie dormant. I don't think I'm going to see anyone in the UK with such up-to-date knowledge any time soon. We are so behind the times and maybe only get referred to a decent specialist if we can shell out many hundreds of pounds for travel, accommodation and treatment. I was interested in a similar scenario in this article: http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/ Thanks again for the detailed information. I wish you all well as I know how rotten this can be and I hope so much for help to come.

I think the reason A&E and the team of neurologists I saw don't worry about it is that it's linked to anxiety and stress and I know mine get worse when I am stressing about anything.

Heart wobbles a lot and I feel sick. I lie on my right side or my back. Flat pillow or I bite my tongue. Not feeling too good in bed these days. I tried to elevate my bed-head but not very successfully. How did you elevate yours?

I'd say I get worse each year since 2006. I do all I can to try and get better. I've not seen anyone at the hospital for dysautonomia, so I am floundering.

These myoclonus jerks seem to be linked. When my nervous system crashed in 2007, I was jerking my limbs day and night for weeks. Sometimes very regularly and at other times hours in between. The neurologists weren't too concerned about them. Eventually over the months mine faded and I just get them at night. Half the brain is falling asleep and the other half is awake and that side wakes the other side up and results in the jerk of limbs or whole body.

I had EBV in 1984 and the ME/CFS started. I had some autonomic symptoms over the years but it wasn't until 2006 that the POTS/Dysautonomia really kicked in. EBV may have re-activated in your case, but I think it started the autonomic dysfunction in me coupled with surgery around the same time. I now wonder if POTS and ME/CFS are one and the same thing. I was tested for EBV a few times over the years but results were negative. Since writing this I have found out that I have long-long EDS and this predisposed me to getting ME and the EBV gave me Glandular Fever which triggered the ME and subsequent problems. If you check out any information about EBV it can cause many, many health problems.

Sorry to hear that you're neighbours have let you down - but that's exactly what they have done. I would continue to be polite and pass the time of day but no longer do things for them as you are not well enough to and their attitude stinks. Even if they don't understand your illness they should show an interest and understanding that you are unwell. They seem to be the ones getting more out of the relationship. I no longer pay much heed to those who cannot or will not support me. I have thrown down the gauntlet.

Are all of you diabetic?

Excellent news. Well done and long may you rein supreme with better health. It is hard work and takes a lot of willpower which isn't always available when you feel unwell. Gluten damages nerves in the gut and I know with my health issues my bowel seems to be the epicentre of the whole thing. My gut is the happiest it's been for months since going gluten-free. I also cut out foods by elimination that were causing issues and I feel heaps better. I have a long way to go, but I am willing and determined. Good luck anyone who is going to work on their diet, such as only organic and low carbs etc.

No, I do eat sprouting beans and seeds but not Brussels sprouts. All of the green leafy veggies give me gas except pak choi. Any change in diet needs willpower and dedication. The hardest part is food as a social event when friends and family are eating with you or there's no choice when you eat out. I take a box of mixed raw veggies to eat if I am out for the day just in case I cannot access the decent stuff. Temptation is the hardest part and I usually tell myself that the food is either good or bad and that stops me from straying.

It depends what diet you follow and what suits you personally. Having had IBS since 1985 I know what food upset my tummy and others can now cause a flare up, it constantly changes. Meat isn't ideal to eat if you have gastroparesis as it stagnates in the gut and that's not good, neither is dairy. There is also a list of about 20 culprit foods with IBS which cause bloating and gas and I know that it was clear that the sprouts and broccoli had to dropped from my diet. Gas means bloating and worse nerve and head/eye pain. Cutting out sugars/carbs means less gas and bloating, so it's all worth it. People think it's hard to find things to eat, but I ate a stir fry with healthy oil last night and it was packed with 12 different veggies. I love salads and roast veggies, too. I'm not having any bloating and related symptoms and that means a lot. I took guidance and it was suggested that what I have been eating is really healthy and fresh. I only buy organic veggies and fruits (in smaller amounts). I was never much into meat anyway and I found it hard to digest. I have always loved veggies and keep adding new ones to try. I just wish I had remained on this vegan-based diet years ago as I felt pretty good then ruined it and my health. I missed being a strict vegan and was a campaigner but lost my way for a time and now I'm back. I do supplement and that helps.

I have taken advice from a doctor who treats people with neuropathy. I've been told to basically move around and if I do any exercise at all to do gentle yoga, tai chi or swimming. For ordinary neuropathy then exercise can be tolerated but if you have autonomic neuropathy then exercise is not advised because of heart, BP and respiration issues. I know personally that if I exert myself just a bit I get very out of breath and my heart feels like it's going to burst. The doctor said that he has known of cardiac arrest with over-exertion and caution is needed. Elsewhere I have read that exercise can rebalance the autonomic nervous system, but I feel that this is not ideal at all. I think care must be taken at all times. As with all people with ME/CFS there's always pain and recovery is slow and hard. I feel too unwell now to do more than short walks around the house daily. Going outside is a chore and yet walking was something I greatly enjoyed. I'm still thinking that POTS and ME could very well be one and the same thing.

To begin with it's like a detox sometimes especially if you cut out troublesome foods. You can notice a difference after a few weeks and sometimes even quicker. Initially you may feel worse as any yeasts or reactions die-off. I have been low sugar/carb, no dairy, gluten and pretty much vegan. I still wasn't feeling as well as I should have done having tried this diet in the past and then found out the acid in tomatoes was bothering me and sprouts and broccoli. They were reacting in my gut and making me feel very unwell and gassy. Anyhow, I cut them out and eat root veggies (in small quantities as they're high in sugar), pak choi, celery, peppers, courgette, aubergine, green beans, cucumber, lettuce etc.. Lots to choose from. I have a natural rice-based cereal for breakfast with almond milk and sometimes put a little fruit with it. I eat lots of salads, stir fries and roast veggies. I cook all meals from scratch. No junk or known issues removed. I was on this diet for 11 years from 1993 and I lost a lot of excess weight and the candida went. My health improved and stupidly I reverted to my old ways of eating including dairy, sugars and wheat and then the neuropathy came on within 2 years. I have since been found to be dairy intolerant and cutting that out made me less mucusy in my head. I noticed that my snoring decreased, too. I'm back on the diet and some of the excess 4 stones in weight (56lbs) is coming off and my tummy is less troubled. I am also taking a probiotic, digestive enzymes and milk thistle; so it's like a detox. I am also taking various other supplements sometimes daily or every other day. I felt rough for the first five days and my face got spotty, but I'm going to the loo better now and I am starting to feel more alert. Plenty of water, too. You should feel some benefit before long and over all more improvements to your health. I just wish I had stuck to the diet I had before and not strayed.

Yes get your eyes checked properly. I think any blurring or pressure changes need to be addressed. I know people with dysautonomia do have issues with slow pupillary reactions etc and the pressure thing.

You know more than me as you have had a TTT and treadmill, I have been offered neither of those as POTS doesn't seem to be recognised in many parts of the UK. At least you had someone say what it was. I think in the US Florinef and Midodrine seem to be prescribed but only certain doctors prescribe it over here. I'm not surprised about the mono as the trigger as it started the ME/CFS with me and the worst of the dysautonomia have come on in the past 8 years or so. Glad the Florinef is helping and I'm going to see if anyone would prescribe it to me. Good luck and keep learning! My understanding of Florinef is that it helps to balance out blood volume thus irradiating many of the related symptoms. I think anything is worth a shot any so many POTsies seem to be taking that or Midodrine or both.

Has anyone with ME/Dysautonomia/EDS/POTS etc linked head pain with bowel issues? Some years ago I knew that I had flushing and slight head pain when I was constipated and over the years as the nerve damage spread, I noticed that most of my headaches were linked to my bowel filling up and also with gas. They have worsened in recent months to include more eye pain and the headache has spread to include my face, too. I now get head and eye pain when I need to go to the loo and when my gut has gone into spasm afterwards. This spasm can last for many hours afterwards. I have tried anti-spamodics and I think that they made the problem worse. I have just been diagnosed as glaucoma suspect and that seems like a coincidence that the raised eye pressure and head/eye pain have come at the same time. The ophthalmologist says it's merely coincidence, but I'm not convinced as the head pain is worse on my left side, as my bowel, and the worst of the neuropathy is down that side of my body. Does anyone else get this problem and if so what has been said by consultants etc?

Have you looked into specialists in other areas? I know the closest to me are Birmingham and there are a few in London UK. Some doctors specialise in POTS and some in EDS. I will have to save up to see anyone. If the tests are done it is some way there and it should all go on the medical notes. I educate doctors whenever I can and sometimes they are genuinely interested. Maybe if you can tie things together it will present a more definitive picture. I need more tests done. I hope you get somewhere and find someone who can help. Do you have any support groups, we have POTS UK and they have a list of recommended doctors.

My former neurologist knew little of ME/CFS and autonomic dysfunction. All he did was refer me to the pain clinic. I have had some tests done like ECG, Echocardiogram and Breathing Tests, but not TTT even though my BP and HR massively changes on standing etc. They know I've had permanent tachycardia since 2000. I think there should be more investigations it's just that it's not the neurologists area of study and you need to see a cardiologist, respiratory doctors etc. Leaving it won't help one bit. I need to see someone who knows about the whole condition and can treat it accordingly as it's so complex it covers several areas of medicine and involves so many disciplines. I am hoping to save up to see a doctor in London who treats people with POTS, he's a neurogastroenterologist and and also interested in EDS. I hope you can get somewhere and it's not left like I was until it got bad. I still don't have mine properly diagnosed. Ah! Sorry, I didn't read your later posts saying that the tests were scheduled. I hope you get some progress on this as this is far more than I have achieved.

I take Gabapentin and Nortriptyline for nerve pain and I know they don't repair nerves just block some of the pain. I take supplements to help repair nerves like B Vitamins and Alpha Lipoic Acid.

Yes, I look sick and weak. My face is pale except when I really flush up. I don't look good these days bloated from meds and lethargic.

You need to seek help from the medical services or even the authorities. Your well being is paramount and your parents ideas do not come into the equation of they are not looking after you. Take care and seek help or get someone to do it for you if you can.