diamondcut

I would agree with what you are saying, my tachy is terrible, but my blood pressure never really changes at this point in my life. Even when my heart has been slowed down by medication and its made my heart then beat irregular and i have been very weak and dizzy, my BP has been perfect and i could never understand why or how that could be. So that kind of explains it.

Oh and Niomi I would say that if your HB1C as they call it in the UK or use to, is normal, and you have bought yourself a cheap glucose monitoring machine from the say the pharmacy and tested yourself through the day and night and all is normal, what would be the point in further testing if it is only going to make you ill? I think in a non diabetic, after a meal your glucose levels shouldnt go above 10ml i think, so if you are only getting low blood sugar levels, this does not mean you are a type 1 or 2 diabetic. If you diabetes i think you would recognise the symptoms more, drinking uncontrolable amounts of water and never quenching your thirst, weight loss, acidic breath, and feeling generally terrible, although thats hard to distinguish for a lot of us i know!! Just my opinion. Interesting enough i did have a gastric emtying scan, and it was slightly delayed, however its believed to be a result of the EDS not being able to hold the presurre in the stomach and intestines and is slow at pushing the food through, that cuases the delay in emptying, not nueropathy in my case.My Dr explained it as having a rubber water pipe for a tap instead of a mental one, when you have EDS! It cant sustain the pressure.

I have had type 1 diabetes since the age of 11, when i look back thats when i can first remember all the POTS symptoms starting, at the time and all through my teenage years i put feeling sick and poorly down to the diabetes or nueropathy cause by the diabetes. Now years later i have had many tests in many parts of the body looking for nueropathy and unbelievably i dont appear to have nueropathy of any degree. So i believe a lot of it in my case is EDS related and autoimmune that happened when i hit puberty and 11, some complex auto immune issue happened, attacked my insulin cells and set off the Diabetes and POTs. The route cause is the EDS that somehow sets the autoimmune issues off i think. I strongly believe if i didnt have EDS, I wouldnt have Diabetes even though they can not prove that link yet.On my mothers side there is a history of both Diabetes type 1 and EDS, in fact my relative was the first person to ever have insulin in the UK years ago, so they were extremely lucky to have lived, this person also had EDS i think. At present i dont have celiacs or thyroid problems..........watch this space though.....

I too have mild GP, the explination was due to the EDS, the instetines can not hold thier pressure and push the food through properly because of the stretchyness of the gut. Thats another reason why we bloat so much too, our guts are to lax and then bloat out!! Have any of you tried Resolor?

It did help my heart rate, but sadly for me making it slow down makes mine begin to beat irregular so there wasnt much point. It was very harsh on the stomach too, lots of heartburn. Just my experience.

Hi NM Thank you too for letting us all know how you got on with surgery, you must have been through some tough times and felt pretty awful i can imagine, like you would never get better!! I could be looking at surgery this year so its really helpful to hear other potise stories. I know when i was 19 i had surgery to remove my appendix and my blood pressure after surgery was very very low, the nurses where running around and panicing, this was before my POTS dx, but of course NOW i know why it did it!!! Its strange but Codeine, makes my tachy better!!! I have no idea why as so many drugs makes my tachy worse, but there you go we are all different. Keep posistive and hang in there. I am always telling people how Ketotifen (although i am in the UK so can get it) allowed me to eat solid food, after 2 years of living on sugar drinks purely for energy becuase i was so scared to eat as the nausea and vommiting were just awful. Its a med i would say to people worked wonders for my GI symptoms.

Hi Heather Thank you for your reply, you almost found you POTS back to front then! I have read blogs on fusions etc and there is no cut and dried answer as to if it will help or not is there, i can only go on how my nuerological symptoms have just declined so badly this last 2 years, yet my HR and BP has stayed the same. Things like travel, any sort of head movent, tracking things with my eyes, reading, washig hair, all make me so dizzy and weak but not in a POTs way if that makes sense. The data i have collected from my most recent MRI all has strong evidence of CCI, now its about finding a dr who will be able to recognise this happens with EDS and is prepared to help. My next appointment i will be asking for flexion and extension images. Do you think mri is better than x-ray because it will show up more soft tissue or brainstem compression/streching? It is such early days for you and i suppose you will never know if you hadnt had surgery, perhaps things would have got a lot worse, possibly not, but as hard as it has been for you i would think you did the right thing when you read about the awful predicament you can be in when your brainstem and spinal cord is compromised. I hope you continue to recover well

Thats very interesting Katy thanks, i hope maybe you do find some sort of answers. Thank you Heather for the info, i have had a few people tell me different prices but at least it gives me some sort of idea. Yes i do have instability, mine looks like it is the posterior part of my C1, its coming away from my skull and the gap or space is 3 times what is with in normal ranges. I have a partly retroflexed odontoid aswell as other tell tail signs such as plannus build up around the c2. My problem here in the UK is getting drs to do anything about it. I have read up as much as i can on this subject and understand surgery is very drastic and dangerous but i think we all reach a point with our pots or eds that you have to take what options are out there. How did your fusion surgery go? How are you doing now?

Thanks Katy and others, i have done that actually, it sounds like most surgical procedures are around the $40.000 mark. Let me know how you get on with your angiograms i would be really interested to know.

Whilst there is some discussion on here about venous drainage and neck and skull issues, i wonder how many of you on here have had in particualr rotational CT's that have found instability with the spine and Angiograms that have come back showing some kind of circulation problem. Especially those of us with headaches and migraines.

Can anyone please tell me if they have had cervical fusion for Cervical cranio Instability and/or Chiari Decompression surgery? I have been recently dx wtih CCJ but my options in the UK for surgery ande help are not great! I am trying to ask people who know about or had these types of surgeries so i can get an idea if i came to the USA just exactly what i am looking at as far as money to raise. I see on google chiari can be around $30-40,000. But can not find anything on cervical fusion. Has anyone been treated at the TCI or by Dr Fraser Henderson? Many thanks

I am very similar to you with the pressure you are describing, right behind my eyes and also the neck pain. I think E soskis is saying in how we have a combination of headaches all chipping away at us. I think i have fluctuating high pressure, Diamox helped for a while but seemed to stop after a couple of months, sleeping at about a 40-50 degree angle has made such a difference and helped me though. Its hard at first but you do get use to it. I am the same in that the pain is better on standing, laying in bed flat too long in the morning is a bad idea for me and standing clears it for a few hours. They do sadly return though.

I think you will struggle to find a Immunologist in the UK who will do all of that, In my experience i did get to see a Immunologist on the NHS not long ago and they ran the tests for Lupus, Antibodies, CVID etc. For mast cell issues i managed to get my GP to test for the basics, but i think there are some Chronic Fatigue experts here who can do more for you. Small fibre nueropathy, after doing a lot of tracking down is only avaliable in London as not many people have the biopsy testing stuff here. Its a real effort but you have to see lots of people for all these things here in the UK sadly.

I have not had much luck with magnesium for that exact same reason so i shall try the one suggested- thanks LMG I think with my headaches and migraines i suffer too from sensory overload and traveling in the car is awful, does any one find reading very difficult too? To follow the text with out feeling very sick? My heart can even start to jump all over the place once i read or type to much and or look down.

Thanks for that Rama Thats of interest to me as i suffer from lots of headache type problems. Is there any mention of if taking normal supplement form of L-Cartinine can make any difference?