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Everything posted by diamondcut

  1. 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.
  2. 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.
  3. 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.....
  4. 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?
  5. 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.
  6. 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.
  7. 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
  8. 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?
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. 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.
  14. 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.
  15. 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?
  16. I recently came back from a consultation with a new POTs Dr and he gave me an explanation as to why if i can manage to stay at a 45 degree angle when sleeping, i felt better. This is helping in dramatically lowering my heart rate in my sleep and in the mornings, which at least gives my racing heart a short break for once. My typical waking HR is 100bpm, i can get it to 80bpm now by sleeping this way. Ok it all changes as soon as i am up and about but atleast its something. My nausea and dizzyness in the morning is better too by doing this. My Dr's explanation was that it helps many people with Syncope conditions, not just POTS. He said it was mostly due to less blood pooling in the abdomen and especially the vital organs like the kidneys especially. He said it allows the bodies autonomic nervous system to re -set its self by sleeping upright. Does anyone know what he means more exact by this? It would be interesting to see how many of us can benefit by sleeping more upright, even if it makes our mornings more bareable.
  17. Rama Is this a test you are trying to have done? Do you know where this study was done? Will it be certain research centres in the world that do this MIBG scan.
  18. Its strange but for me going to sleep as upright as i can helps me to wake up with out the instant pain, i have been wearing a soft collar at night too which has helped. I believe its due to two reasons that this has helped. 1, sitting upright helps drainage of the CSF fluid and keepS the CSF channels more open for the fluid to move more freely.They believe EDS people have poor drainage issues too. (if its pressure type headaches you think you are experiencing) 2, Sitting upright as close to a 45 angle degree as possible does not allow the blood to pool in the mid drift area, so i was told by my Dr and should help your POTS aswell as headaches. My Tachy iin the morning is far less when i sleep upright.
  19. Hi there I have seen Mathias and yes he does have a big team aroubd him but like Emma says it takes a long long time and i have seen a couple of POTs Drs since who in opinion are still good. As far as Oxford goes, i dont know if there are any, but it really isnt a case of every city has has a good POTS Dr sadly. There is a Dr Deering in Glocester which is not to far from you, it took 2 months for a NHS referal which isnt too bad, you can see him priviately too. He is a Cardio. I am also going to see a Prof Gammage on the NHS in Feb aswell, that took about 3 months aswell. He is a cardio so i will post how my appointment goes. Emma - I hope all goes well with Mathias, it will be interesting how many test they run on you going through the NHS!!!
  20. I am from the UK and had a referal to a Immunologist on the NHS, if you ask to be reffered simply becuase you have POTS, its not a good idea to ask for referal on just those grounds. I said to my GP that i believe i have mast cell issues that i treat with anti histamine meds for my POTS, but that i also suspected i did suffer fro other allergies as i have seen an improvemt since being on them. Its certainly worth having your immunity and allerg response checked by one as it could be another piece to your pots puzzle. I had my tryptase blood taken at my local gp surgery, but its not a gold standard by any means for mast cell desease. I would ask to see a immunologist, it cant hurt.
  21. Issie that is excellent news that you have seen such an improvment so far and especially with your kidney function. Have your vitals changed at all since being on this diet like HR and BP? The only thing a lot of us have to watch on here as its so important to us is if we were not taking magnesium suplements, its likely we willl see an increase in things like headaches and migraines amd heart and muscle funtion. I take magnesium for my heart and head and just wonder if by doing this diet having no to low magnesiatum what effect this could have in the long run? Have you thought of that? Do you know how much magnesium you are getting from the diet exaclty. I just wanted to post this link too, as we were all discussing CCSVI earlier in this post and especially related to the Driscoll theory. This video was recently done by her explaining that getting to focused on CCSIV which limits problems to the neck only and freaks Dr's out when they hear the word angioplasty as so little research has been done. Its believed by her further research the problem with our veins is more systemic rather than the neck only. In a way very similiar to what Dr Fry is saying but for different reasons. So maybe we are getting closer to another answer of the problems we all suffer, maybe its our veins with all the different Dr;s looking into this now. Here is the link anyway
  22. Hi Helen I am from the uk, myself i am not on benefits at present although i know others who are for other reasons. My thoughts would be think carefully about every question you answer and dont make things out to be better than they may be, all you need to do is say you are ok walking certain distances and they could have you working in Tescos lol!!!
  23. I have just started Gastrocrom myself, and its making the nausea bad about an hour after taking it, this can be worse when you eat too, BUT there is a massive difference in my heartrate when going to bed. Its really come down and whats amazing is its doing it without causing any pvc's. So i am sticking with it. I think Gastrocrom and my H1 blocker is startig to help my migraines as i up the dosages.
  24. Thanks for that, Its strange it has taken me weeks to tolerate Benadryl and others did exactly that and made me worse, other anti histamines have caused all sorts of problems, Ketotifen which i believe is an H1 and Mast cell stabliser really helped with the nausea but i had this strange numb tinglness in my hands. Now i should think that is not a dangerous side but it not nice. So i have settled with the more old fashion Diphenhydramine. Thats interesting Brethor what you say about mast cell meds being more important to help with POTS symptoms. So far Klonopin and Gastrocrom havnt given me any problems touch wood.H1's are so difficult to get started on.
  25. I have tried quite a number of anti histamines, and reacted not so good with quite a few, i seem to be doing ok with Diphenhydramine even though this is one of the older class of anthistamines. I wondered if anyone else was on this? I have read that it is not so effect as some of the newer classes if H1's but if this suits me at the moment i have to go with that.
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