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JimL

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Posts posted by JimL

  1. On 5/4/2019 at 5:12 PM, Pistol said:

    Sorry @JimL about all of your issues. I too had severe stomach problems - had H.Pylori treated twice but later - after developing POTS - had esophagitis, Barrett's Esophagitis, GERD and Duodenitis - supposedly all caused by hyperPOTS and adrenaline surges. This was when I was at my worst POTS wise. Since then I have been taking Pantoprazole twice daily, Carafate and Ranitidine, and for a while GI cocktail as needed. This seemed to have significantly improved my symptoms so that today all I use is Pantoprazole - otherwise adjustments to my diet and eating habits seem to work well. I am a lot better and even have been gaining weight.  My last EGD - 6 months ago - showed stomach polyps as well but no more gastritis. I had to cut out all acidic foods and juices due to interstitial cystitis and this seems to also have improved my GI issues. Have you seen a nutritionist or dietician for advice as to what foods to avoid? I did and it apparently made a big difference. Best wishes to you - hang in there!!!!

    Went on the GI docs portal today and it said I have Chronic atrophic gastritis without bleeding. That doesn't sound good. 

  2. 20 minutes ago, bombsh3ll said:

    No, I can see that being a logical step but I have no breathing symptoms and I don't really fit the clinical picture or the demographic. It doesn't always necessarily wake me from sleep either, I can wake spontaneously as I'm a light sleeper, feel OK for a couple of seconds then feel my heart start pounding & it kicks off. 

    Also I don't think I could ever sleep with a CPAP machine!

    B xxx

    You get used to it. There are also two different kind of apneas. Central and obstructive. Central is neurological. 

  3. 3 minutes ago, bombsh3ll said:

    Do you think it could be related to your lap band at all? Did it coincide with removal?

     

    I always loved that omeprazole let me eat what I wanted, curry, onions, fruit juice etc. I never really drank much alcohol when I was healthy anyway, but with dysautonomia, even without stomach problems, it doesn't go well!

    Depends who is paying for it - NHS it is the bare minimum, looks normal, no cancer, no bleeding, no ulcer, done!

    B xxx

     

    The stomach problems came on last late may and over a couple days time. I went from feeling normal to stomach problems that have gotten worse. I went to doctor, had a CT scan, the only things that came back was a mild inguinal hernia, enlarged prostate and a nodule low in my left lung, probable granuloma. Went to my bariatric doc, did an EGD and found h pylori and gastritis. Did a round of antibiotics for 12 days and they symptoms returned later. Had an upper GI and found I had some mild dismobility. At this time I started to get patulous eustachian tube. bariatric doc said lets take the lapband out. Beginning of september, started getting tingling in my feet. Halfway through september started getting double vision. Lapband was removed Sept 22. After this I developed drop foot on my left foot. Went to a new PCP and he sent me for a MRI of lumbar spine. I also made an appointment for an ophthalmologist. MRI came back bad stenosis and disks in L2-S1, L4-5 is so bad that cord disappears on MRI. Got that fixed around Halloween. Went to ophthalmologist in november. Ordered a MRI of my brain. I also had a MRI of neck as I had issues related to that, had previous fusion in 2012. Brain scan came back ok. One test for MG, the ACH whatever it is came back negative. Sed rate and CRP were normal. I even paid for a ANA, which was normal. Eye doc sends me to a neuro eye doc at Mayo. What an ***. She was like, you have 4th cranial nerve palsy. Don't know why, but I'll send you back to your eye doc. No curiousity as to why. My eye doc basically tells me that when my diplopia stabilizes, come back to get prism glasses. I've never had eye problems in my life. Around christmas, I get palpitations and fast heart rate. Go to ER, no heart attack, sent home. 2 weeks later, same thing. I get referred to a cardio who does all the tests. Minimal plaque, no b vitamin deficiencies, but it seems I have OI and sends me for a TTT, which I fail. Sends me to an EP, who blows me off nicely as there's nothing he can do for me. During this time, my ortho says I need more cervical fusion. Get a second opinion, yup, C2-4 are back. Had that done March 27. Had my colonoscopy and EGD last friday. Neck doc said I couldn't be knocked out 30 days before or after surgery otherwise I would have had the GI stuff done sooner. During this time, my stomach issues remain and have gotten somewhat worse. The POTs stuff has improved a bit. I can function without having to leave work because I feel so bad. Still feel off, just not as bad and I push myself a little more. I made an appointment with a neurologist that specializes in POTS for may 21. I hope he's good and figures this stuff out. I got his name form this site, Todd Levine.  It's been almost a year of this SS and I am tired of it. I don't know how people do it for years before finding a treatment. My PCP thinks that it's all individual problems. I don't. I think I have something autoimmune/carcinoid/PNS or something that makes sense, but who knows. I also think that a lot of my docs think it's in my head. IF I find out what it is, I am tempted to get a lawyer and bend them over. This whole thing has left me not trusting doctors anymore. They're just mechanics for humans that have more education and charge more. Sorry to get long winded. I've just had it with intransigence, incompetence and indiffernce from the medical profession. 

  4. 11 minutes ago, bombsh3ll said:

    I had one several years ago at POTS onset as I lost a lot of weight, but I don't think the H.Pylori test was done. Th best I have is the stool test if I could manage on just ranitidine and gaviscon for the two weeks prior. 

     

    I've heard the bad press, but for me it isn't optional, I'm in severe pain if I forget just one. I do supplement B's, and thanks to POTS I don't get much use out of my hips anyway!

    It's the lesser of two evils. Also untreated reflux can increase risk of oesophageal cancer over years and I've had it since childhood so there is an upside.

    B xxx

    I've never had stomach issues before this. I am miserable though and it's worse off esomeprosole and sucralfate. I am finding I have to cut out certain foods now. I plead guilty. Nothing with tomatoes, nothing carbonated nor alcohol. With my last EGD, they said I had gastritis is two spots in the stomach and they took a biopsy. They did last July too. I just thought that was the normal thing to do. 

     

     

  5. 58 minutes ago, Lee88 said:

    I’m in the UK, I’m honestly at a loss, after feeling okay for a long while the way it has come back is really scaring me. I know something is wrong but what, I don’t know. I’m having an mri on my cranicervical spine because I felt like that could be at play. I’m sort of coming to terms with the fact I’m probably not going to come through this. 30 years was a good run.

    I just had another cervical fusion 5 weeks ago. I had C2-4 done this time. C4-6 in 2012 and L4-5 last halloween. I'm a mess. The sad thing about all of this is that I lost a lot of weight to get healthier and then this shite. I lost 170lbs. I should be doing better than this and no one can give me answers yet. 

  6. 1 hour ago, bombsh3ll said:

    I have nocturnal "panic attack" like episodes too, in fact I was awake most of last night. It's a horrible feeling. It can happen even if I've gone to bed feeling calm and happy. It is like an inexplicable physical sense of dread. I have a fitbit and it shows the spikes in my HR and me waking up at the corresponding times. 

    I never slept well, even when healthy, but I have definitely only had these since POTS.

    B xxx

    Have you ever been tested for sleep apnea?

  7. 33 minutes ago, bombsh3ll said:

    That's a really fascinating article Jim. I have to be honest I've never really thought much of old H.Pylori given about 50% of us have it and its presence/eradication seem to correlate poorly with symptoms, but I've never actually been tested myself.

    I've been on Omeprazole for about 20 years for reflux. I don't know how I'd be off it for the required 2 weeks for the test though! (Here it is done by stool sample in the community, we used to have a blood test for which they didn't need to stop PPI, but it is no longer available).

    B xxx

    The only test that's truly conclusive is a biopsy through EGD. I just had one last week and we'll see if it's still active. I've been miserable for months. H Pylori has been known to cause autoimmune response. I have to wonder...PPI's long term are bad. Can cause B vitamin deficiencies and if I've read right, joint/hip problems. 

  8. 9 hours ago, KiminOrlando said:

    I have night terrors.  I actually dream that I fall asleep in the bed and room where I actually am, wearing what I am wearing and am terrorized by things going on around me. I wake up screaming, but can't tell if I am awake because it is all exactly the same as the dream except I don't know if there is an intruder in the house. It has been happening for decades. Even when I stay in a hotel, the dream is about the hotel room. It is amazing the detail I don't even know I can remember.  If you ask me those details when I am awake, I wouldn't remember them.

    My brother has night terrors. When we lived at home, It got so bad that I would wake up before he had them. That's how predictable they were. Around 1:30am. He'd jump up screaming and run. I never saw him move so fast. One time my mom got in the way and he went through her. Another time he tried to get out of the window and broke it. We were in the second floor. He did a sleep study for it. They told him what to do and what not to do. He never said much of why or anything. Drinking can bring it on, that's all I know. 

  9. 52 minutes ago, Derek1987 said:

    Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.

    I guess the brain loses enough blood flow to check out. I woke up and could talk, but it was unsettling because I didn't know it happened. It's like someone pulled the plug. I have to say in retro I didn't feel right before it happened. Hard to explain. Flushed, strange feeling in my abdomen and chest, warm, very warm then boom. 

  10. 1 minute ago, Pistol said:

    @JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

    @Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

    They said I was out for about 6 seconds. It was scary as I didn't know it happened. I just woke up flat on the table knowing I had been near vertical. 

  11. 3 hours ago, Pistol said:

    Sorry @JimL about all of your issues. I too had severe stomach problems - had H.Pylori treated twice but later - after developing POTS - had esophagitis, Barrett's Esophagitis, GERD and Duodenitis - supposedly all caused by hyperPOTS and adrenaline surges. This was when I was at my worst POTS wise. Since then I have been taking Pantoprazole twice daily, Carafate and Ranitidine, and for a while GI cocktail as needed. This seemed to have significantly improved my symptoms so that today all I use is Pantoprazole - otherwise adjustments to my diet and eating habits seem to work well. I am a lot better and even have been gaining weight.  My last EGD - 6 months ago - showed stomach polyps as well but no more gastritis. I had to cut out all acidic foods and juices due to interstitial cystitis and this seems to also have improved my GI issues. Have you seen a nutritionist or dietician for advice as to what foods to avoid? I did and it apparently made a big difference. Best wishes to you - hang in there!!!!

    I haven't seen a nutritionist. Up until last fall, I had been doing keto. I have since gone normal diet and it's made no difference. It seems like some things aggravate it, but it's hard to tell some times. I was taking pantoprazole twice a day at one point and it didn't get rid of it and long term use of PPI's is bad. I have an appointment with Todd Levine for the POTS stuff on the 21st. I hope he can figure all this out. 

  12. Had an EGD and Colonoscopy yesterday. GI issues were the first symptoms I had of a problem, last june, late May. POTS symptoms started around christmas. Originally, they did an EGD and found H Pylori and gastritis. Treated it, but the symptopms came back. With yesterday's procedure, I had two polyps and still have gastritis. Understand I am taking esomeprosole and sucralfate. I have to wonder if I have some sort of chronic infection that is causing these problems. H Pylori can cause all sorts of problems: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017036/

     

    BTW, sorry I haven't been as active here. I have further cervical fusion March 27. C2-4. I had C4-6 done in 2012. I had a lot of swallowing issues for a while. 

  13. On 4/27/2019 at 12:08 PM, kkirsten said:

    I know! The doctors say my cough and breathlessness, basically all of it is acid reflux which I really find hard to believe at all, it is far worse so I don't believe acid could cause someone this much grief and to feel super unwell.. I have chest heaviness as soon as I lie slanted or flat down, its really annoying and feels unbearable, like a tight band across my lower/mid chest!? x

    GERD can cause breathing problems, causing asthma and/or aspiration pneumonia. 

  14. I had problems with that and wonder how it figures in. This SShow started with GI issues last june and it was found through EGD that I had H Pylori and gastritis. I was belching a lot. I had a lapband too and they took it out. It helped a bit, but I still had and continue to have GI issues. I just had a colonoscopy and EGD yesterday. two polyps, a hemmorroid and I still have gastritis. The doc did biopsies and we'll see if H Pylori is still active, but I've tested negative with poop and breath tests. From what I have read, cronic H Pylori can cause autoimmune response that has neurological consequences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017036/

  15. On 4/25/2019 at 10:54 AM, bombsh3ll said:

    I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. 

    I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. 

    Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. 

    This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. 

    B xxx

    I just find that if they can't figure it out quickly, they default to it's in your head. There seems to be a resistance to admitting they don't know. 

  16. 5 minutes ago, DatDudue55 said:

    Yeah absolutely. That is my main concern as well moving forward: trying to find the underlying cause. I was actually just tested for carcinoid tumors and that test came back negative. 

    So you're essentially saying that because I'm a male and I'm younger, that you feel that the underlying cause may be more serious? I was told by my Dr that IBS can be an underlying cause. I've had a lot of stomach problems and was tested for Celiacs and they did an endoscopy and colonoscopy of my stomach only to find mild acid reflux. I also believe I am gluten intolerant. Let me know what you think of all of this. Thank you for your input!

    Not the younger part. If you were older, yes. Young people seem to get POTS more often. I think it's more unusual with men over 40. I have a colonoscopy and EGD a week from tomorrow. 

  17. 3 minutes ago, bombsh3ll said:

    Dr Benjamin Levine who coined the "grinch syndrome" theory. 

    The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. 

    If someone can recover orthostatically after 27 years of bedrest, this would imply deconditioning is not a cause of permanent orthostatic disability. 

    B xxx

    There are over a dozen causes for POTS, deconditioning is just one and low hanging fruit at that. I have an appointment next month with Todd Levine, who is a neurologist that specializes in POTS, that's why  asked. 

  18. 11 hours ago, bombsh3ll said:

    I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. 

    Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. 

    I will be following her story. I wonder if Dr Levine will too. 

    B xxx

    Which Dr Levine?

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