TCP

It's an old thread but linked my my current problems with raised eye pressure possible dx of glaucoma. I know the link is my IBS issues although we have glaucoma in my family it is a secondary consequence of retinitis pigmentosa. There was poor night vision from many years ago for me and in recent years my pupils were responding slowly to changes in light. My vision has been getting increasingly more blurry especially since being on meds. Last November the interocular pressure was raised over a period of weeks to 21/22/23 and in January it was 24 in both eyes, when I went to eye casualty. This has been accompanied by eye pain and headache. Unfortunately there has been massive delays in my getting any attention and I finally go to the eye dept for some.

Never delay having your eyes thoroughly checked out. I'm hoping mine will be OK.

Try not to worry too much if you've been checked out. I know stress makes my symptoms worse and I do some meditation to calm my nervous system down. I have dizziness, severe nerve pain all over, tingling, sharp pains and intense burning; muscle cramps, nausea, IBS is off the scale, palps, temp all over the place and BP, breathing problems etc...Resting the nerves seems to help and my bowel is the epicentre of my issues. If my bowel is upset then my whole body is and it's now linked to eye pressure and eye/head pain. I try not too stress too much now and I'm still working on my diet as the nerves in my large bowel, made worse by surgery, are beggars at playing me up.

I hope your symptoms abate or you get to the bottom on things (excuse the pun there).

I think that anything that can alter the body temp is going to cause problems. I try to shower/bathe in body temp water not too hot or cool. I also take it steady but aim to get out as soon as possible. Some time resting after is vital. Avoid heat at all costs and watch when bending the head forwards as this can make you dizzy. I tend to reduce the temp of the water a little to cool my body down before I get out and if I get dizzy i lie down until it passes.

Take the probiotics, too!

Too many carbs, sugar, gluten and dairy can play havoc with the digestion. Small meals and drink plenty of water. Cut out the bad stuff and the gut should settle.

Oh yes and try to go gluten-free as gluten damages nerves in the gut

I'm having major gut problems, too, with spasm and nerve-related after shocks. Have you been advised to take probiotics for the SIBO? I know that people do take them and they feel some benefit as the antibiotics kill good gut bacteria as well as the bad. See what your doctor says. A friend's daughter was recently diagnosed and was reluctant to give her little girl the antibiotics and has been trying the probiotics and see how she goes, under doctor for advice, I hasten to add. I've been taking them for IBS because of weird reactions to foods and they seem to be calming my gut down.

The back pain and headaches are related to the gut being upset. I find my pains are worse when my bowel is filling up and I have gas. By calming things down it improves. I have taken lots of anti-spasmodics and now know they make me feel worse. The other symptoms you mention are all linked. My eyes are being affected by the nerve and circulation issues with my gut and make sure you have your eyes checked for pressure problems. I go next week about the pressure in my eyes and I know it's liked to my gut. I have adjusted my diet and cut right down on carbs, no dairy or sugars. Plenty of water throughout the day to keep things moving but don't drink too much all in one go as it can effect the eyes, as can blowing hard and bending forwards too much.

Hope this helps

My skin is white-grey-yellow depending on how I am feeling and my lips dark pinky-purple. Have been like this since I got ME/CFS back 30 years ago. If my BP goes haywire I flush up really pink or if I get too hot, but I'm mostly a sickly yellow-white. All circulation/BP. I also have tachy around 95-120 when resting.

I can definitely bend my thumb down to my forearm and my elbows overflex.

Anatasia

I can understand you being upset, but I never give up home whatever I am now diagnoses with as it gives me power each time something is discovered and named and that gives me a base from which to work. I always believe that I will get well and do all that I can to keep my body healthy. Don't give up xx

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barb10

I get the burning red hands and feet as I get neuropathic pain all over my body and head.

barb10

Many thanks for this information. I have saved that, too. I agree we all need proper diagnoses and treatment. Yes there are crossovers of many illnesses and that's what makes it so hard to get where we need to be.

All the best

TCP

Many thanks, Barbara, that is very kind of you and I have read the article and it makes me feel even more convinced. I even have the clicking joints. It sounds like there is a familial link for you as the signs seem to be there. I'm not sure in my family although there are a lot of joint/spinal problems etc

Yes, I read about Julia Newtons' work via the ME Research UK information. I think it looks like it could really be a factor in our conditions and it seems to make some sense to me. It's like the links with ME/MS/EDS/EBV/POTS/Fibromyalgia etc... very interesting though.

Thanks for your feedback and I wish you and your family well

Trish

Yes, I realise that, I wondered if anyone else had similar signs. It's sometimes so hard to get GPs to focus on or diagnose such things and it took 8 years of struggle to get a diagnosis of ME/CFS. I've been trying for 30 years to get some help.

PS Stress, tiredness and generally overdoing it make these worse for me and they really come out more in my sleep and lead to my head jerking and tongue-biting

The jerking and twitches started in 2007 when my nervous system went haywire and I was hospitalised 7 to A&E and admitted twice. I was jerking day and night, some light finger flicking and full blown body and limb jerking. It eventually abated and went back to near normal as my body relaxed and the meds helped.

Calming the nervous system is essential. My eyes twitch sometimes when I'm tired or need a magnesium boost. I use an ancient minerals magnesium spray on the soles of my feet in bed at night to boost the levels even further and help with cramping. I sometimes use Epsom salts in the bath and always make sure the bath isn't too warm.

I get periods of sweating profusely throughout the day and night. I also gets cold sweats, too. I believe that autonomic dysfunction can cause profuse sweating or absent sweating.

Thanks very much indeed, maybe I missed that one. Do you have a link to the Facebook group/page as I cannot find it. Cheers!

If anyone would like to message me if you're from the UK please feel free to do so

Hello. I would like to be able to have more knowledge about the different drugs used to treat POTS and the related issues. I have ME/CFS and autonomic and peripheral neuropathy. I realise some meds might not be available in the UK, but it would be good to know what is out there and this means I would maybe be able to inform my doctor about any that could help me. I'm unfortunately not physically or financially able to go to London for any consultations or treatments.

I am currently taking for pain Gabapentin and Nortriptyline and Propranolol for my Tachycardia and BP.

Do you think I could have EDS? I have autonomic and peripheral neuropathy, POTS, ME/CFS, plus scoliosis of the spine (degeneration cervical and lumbar and twisted pelvis). I have problems with my joints and my knee has dislocated three times. My elbows overflex (two orthpaedic doctors and a chiro noticed this) and I have lots of lumps under my skin about pea-size plus sore lumps around the side of my feet. Could these be spheroids and piezogenic papules?

I had EBV in 1984 and that resulted in ME/CFS. I struggled to work until I was diagnosed with that in 1992. I tried to become self-employed in 2006 but that didn't really take off and then in 2007 I got gradually more ill with nerve damage. I haven't worked since and I get worse each year.

Yes, I feel very different as the seasons come and go. If it's very cold my limbs freeze and I feel very sluggish and ill. In the heat of the summer I overheat and feel very sick. I think spring and autumn seem to be the best times for me.

Gitte, you sound like you have pretty much all of the POTS/dysautonomia problems and I'm sure you are more clued up than many of the doctors. I know from personal experience that it's hard to get a diagnosis unless you are lucky enough to find and be able to actually see a doctor who is aware of POTS etc. I haven't had a proper diagnosis and many doctors seem clueless about autonomic issues. I will just keep pushing until someone listens.

I hope you get sorted out

Sorry to hear about your problems. It's all about trying everything and anything until you strike lucky. I agree that the gut is the epicentre of all my problems.When my gut is bad then everything flares up. If I can get it calm then everything abates. I am currently getting more head and eye problems linked to my gut being bad. I shall be seeing my doctor soon in the hope that something can be resolved.

Good luck with your health!

I think yoga is acceptable to help with POTS and it's found to be beneficial with ME/CFS. I would sound out some caution with inverted exercises as it can mess with the postural BP changes. I find changing position can make me feel too unwell, so it all has to be slow and gentle. Staying upright and not upside-down is also best if you have problems with glaucoma, like I have, as it sends too much pressure into the head and eyes.

I had a respiratory doctor say something similar to me last year. I was undergoing sleep studies as I have lots of problems sleeping and have wakefulness, nightmares, twitching/jerking, apnoea and cessation of breathing, tongue-biting etc and he didn't think there was anything abnormal about my sleep and said it was just about my perception of the problem being different to other people. So is it normal to stop breathing (three people have witnessed this happening)? Is it normal to bite my tongue to ribbons as my head violently jerks? It is unbelievable what people say....