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  1. Today
  2. Has anyone used an inversion table to practice standing? I mean in the head up feet down position so not inverted. It seems like for me it would get me some standing time without the extreme fatigue of engaging my muscles to keep upright when really standing. I believe the lack of gravity is the biggest contributor to my illness and I’m always trying to think every day trying to get more standing and sitting time but I can’t increase it at all. So I want to try an inversion table a little a day. What do you think?
  3. Altitude definitely affects my POTS. Flying can be challenging, and when my POTS is flared up it makes flying extremely horrible especially due to feeling very anxious during the flights, GI issues, and urinary urgency. On the occasions I've traveled to a high altitude place such as Colorado my symptoms flared up and I had altitude sickness (e.g, headaches, dizziness, tachycardia, getting winded much more easily). I do things to try to help myself feel better such as wearing compression stockings, staying hydrated, etc (but when my POTS is flared up it doesn't seem to make much of a difference). .
  4. Does anybody get left arm pain? Of course I keep reading it can be related to the heart so my anxiety is starting to rear it's ugly head. I have had it on and off for a little of a year. It started when I was pregnant with my last daughter. The first time I had chest pain along with it. That first time and many times since I have had many ER and doctor visits. Aside from an occasional abnormal EKG that the doctors seem to think is no big deal, nothing has come up. Even if I were assured it wasn't my heart, it still really hurts and of course I'd like to know what is going on. Idk how to describe it. Deep ache maybe? Idk. It is upper inner arm. Seems beneath the bicep before the tricep but I'm not entirely sure. Any experience, advice, or anything else you have to offer would be appreciated. Thank you.
  5. Yesterday
  6. I finally just told people that not passing out and feeling terrible/not being able to get out of bed for the rest of the day and possibly the next was more important to me than their opinion. It sounds rude, but so was what they were doing to me. When I showed them I was going to put my well-being over their perception of me, things changed. Maybe they still think that, but they don't say it to me any more. Learning to say no and not worry about it is a big part of this. I say no so that I can say yes to more. You can only control what you do. I have learned not to take on guilt or responsibility for other people's actions or thoughts. It has been liberating. I realize this approach isn't for everyone.
  7. @Scout - you should let your family/ friends read this thread!!!!
  8. I live at about 6000 ft (high desert, dry) having moved here from sea level. I have not noticed any BP changes (I am NMH) but have noticed a lowering of oxygen levels. Functionally this climate is better for me because it is arid but I’d guess the response to altitude is going to be individual. When I’ve been in Santa Fe it hasn’t bothered me but when I was I the high Himalayas I felt really awful, though that was much higher.
  9. I totally get why you made that decision. Single level fusions in EDS often end up exacerbating problems above & below & further surgeries later on are common. Also that level is too low to have any bearing on any brainstem pathology. That must have been really scary, I am glad her fusion was ok. Frustrating that the PT didn't listen post-op. The team in Barcelona where I would have surgery have a lot of dysautonomia patients so hopefully they would be prepared. How did you deal with fainting in daily life whilst it was healing? That is what worries me, if it didn't work I could knock it all out of place before it healed if I went down & hit my head or neck. B xxx
  10. One of two things that helped me in similar circumstances was bringing family to Dr appointments and having the Dr explain it. My husband came with me for the first several years and my neuro NP always asked him as well as me if we have questions. The other thing that has helped a lot is getting people to read The Dysautonomia Project book. It has sections specifically for family/friends and another for Drs. It helped me understand what is happening and has definitely helped my family understand. This illness is so difficult day to day that having people doubting is just unconscionable. I am so sorry that all of you have experienced this. At least we have each other.
  11. In my case, altitude does make me more symptomatic. I always have a bad flare when flying, and the few times I've been to high altitude over the last few years, I have noticed feeling more poorly. I assume it has to do with how the slightly lower oxygen changes demands on the body, and how our system is already struggling.
  12. @Derek1987 Thanks so much Derek. And I'm so sorry your mum doesn't believe what's going on. It's so hard and hurtful when your own family does that. I know first hand. Showering is still a really hard one for me. My BP is still going up dangerously high in the shower (even when sitting down and using luke warm water) so I have to have sink washes. It's depressing me a lot. I miss being able to have a nice hot shower! Thankfully seeing the specialist soon so I am so hopeful of improving symptoms enough to be able to daily shower.
  13. @Pistol Thanks so much, Pistol. Your words have really helped me have some hope! I'm so sorry to hear that you also have to put up with this, and for so long, too. So frustrating how people think we just want "attention", when, ironically — I'm someone who hates attention and hates having all eyes on me. Nothing makes me more uncomfortable. I think this is why I put off getting a mobility aid for so long: I couldn't cope with people looking at me. You make such a good point about how, if doctors often don't even understand our illness, then how can we expect all our family/friends too. Unfortunately it is the way it is, but we can at least hope for some empathy and understanding from them, and, like you said, if they give us a hard time: we just have to ignore their ignorant words. We know our illness and our reality better than anyone. Thank you again I really hope you're doing well! @TCP I'm so sorry you're going through all that, and the adrenal insufficiency too, which I understand can be quite serious (baffled as to why doctors act like it's "nothing"). It's so hard not to be upset when people say things to us that are patronising and insensitive, and I'm very sorry you've experienced that too. So glad you got a wheelchair, and thank you for reminding me that we have to do what's right for us, and not worry about what others say (they have no idea what we go through). I'll definitely not let her words stop me. Will be getting the wheelchair very soon @lieze It absolutely is so sad how talking doesn't seem to change anything. I'm so sorry to hear you are hurting, too. It hurts me so much to know so many of us experience the same thing — having "friends" and family constantly doubt us, as well as doctors who are ignorant over our illness. My coping, too, is running very low, but I am thankful that we can all support each other here and be the support network that a lot of us don't have in our daily lives. How I wish everyone could just truly understand what we go through. Lots of well wishes your way!
  14. My moms still in denial. She thinks omega 3s will fix me with exercise. Lol. This is after i have explained the disease and how it works multiple times. I used to shower twice a day. Now its a struggle to shower daily. You arent alone in this!
  15. I just spent some time at altitude and it definitely affected me. They say to stay very hydrated to help with symptoms but I still got winded when I tried to be active.
  16. Does changing altitude affect blood pressure and other POTS symptoms? . I am traveling to Santa Fe New Mexico which is 7200 feet high. I’ve been having trouble lately with low blood pressure at night and low oxygen level. I have had parts for nine years. It has recently been giving me more problems.Any suggestions or information? Thanks so much.
  17. @bombsh3ll - The collar helps give her muscles a break from the stress of keeping the upper half of her body upright. Right now it's an Aspen Vista. Her back is heavy and solid. She wore a neck brace, not a cervical one, but a more cervicothoracic for several months after her surgery. It's called a Minerva. It has a front section and buckles and a back section with a ton of straps and buckles including one that wraps around your head. You asked about fainting? I have a story..... The first time riding in a care without the brace, we went to SF to see her neurosurgeon. On the way there, we were in a car accident. I have never been so scared in all my life. She screamed bloody murder from the pain, but thankfully we were heading for xrays anyway, and her neurosurgeon said everything was just fine. Whew!!!!! Her muscles were so rock hard from the spasms that she just couldn't wear her brace any more, so that's why she didn't have it on. That's another thing you need to consider, too, the muscle spasms. They are intense and can cause a lot of problems that you wouldn't think of as well. @KiminOrlando - What you said about anesthesia is sooooo true! My daughter faints for several days after anesthesia, too. And you are right, PT comes in the next day. My daughter had a team full of very savvy neurosurgeons, anesthesia team was hand picked due to her dysautonomia, you name it, all the precautions had been taken. Except for one. PT. They came in, I warned them that she would faint, to be ready. But no, they weren't ready. I think I warned them 5 times that she was going to faint, my daughter warned them too. So, she fainted and they dropped her! I kid you not! I was so mad!!!! They heave hoed her onto her bed and she blacked out more from the pain. 15 people came running in, tilted her upside down, blamed it on her pain meds, and gave her a dose of Narcan. Thankfully, we were blessed with Dr. Grant, one of our wonderful neurosurgeons, and he immediately came in and gave the PT people a piece of his mind and that they had better be more careful with his POTsie patients! The moral of these stories is that things don't often go like they are supposed to. Be well!
  18. Last week
  19. You're right. The Chiari is what got me in his office, but when he listened to me and looked at the supine images, he sent me for the standing MRI with flexion. The local radiologist said they were inconclusive, but he read them and said he saw CCI and thought he could fuse only C2 & 3, but said he only goes in once and if he thought I needed more he would do it then or he wouldn't do the surgery. At that point it became a risk of not being able to drive. I'm not married and no real public transportation where I live. Not being able to drive would be catastrophic to my quality of life. Also, I have an autoimmune component to this little drama, so it was not clear that it would significantly help my situation. They still think mine is more autoimmune driven, possibly EDS III. I faint for several days after any anesthesia, and PT would start the next day. I just envisioned all kinds of problems since he isn't a dysautonomia doctor and lacks that understanding.
  20. I am also very frustrated with this and comments I get. At the moment I do not have the energy to try to explain my own situation but I get it. i just feel angry and want to cry this morning. i think my coping is running low. i wish you the best hang in there. We need support just from the emotional psychological toll this all takes. I don’t know that talking changes anything though-so sad.
  21. I totally get this and understand your hurt, anger and frustration. Educate them the best way that you can and show them the test results and doctor reports. I print off things on the internet, too, if I want to explain certain things. I tell them about The Spoon Theory, too, as that may give people an idea of having to choose what you do and what you cannot do. Some people will remain blinkered and deaf to your words and that is their problem, as they cannot hack you being ill and their ignorance means they aren't interested to learn. They are doing a great disservice to you by speaking and behaving in an inappropriate way towards you and if it comes from a close friend or family member it can be very hurtful. I have had to give up on many people who did not get it because they chose not to. I got the whole, 'get out and meet people', 'some fresh air will do you good, 'take up sport', 'a positive attitude would help' etc. I told them that they lack medical knowledge and I questioned what they really thought of me if they chose to disbelieve the problems that I am facing on a daily basis. I find only a few family members get me and only friends with similar problems, too. I have numerous health problems and combined they can be very hard to live with and because I am overweight from steroids and immobility, and look robust (I'm not), people think that I am fine. I would be very upset if my mum said that to me and I would tell her that I am disgusted that she would think that. I got a wheelchair and I am glad that I did. Don't let her words stop you from getting one. I wish you well and don't let the dissenters get to you. PS I now have Secondary Adrenal Insufficiency and that can be life threatening and it's amazing that many people, including the medical profession, play that down as being nothing.
  22. That's smart - many people have had innocent Chiaris operated on but didn't get better without coexisting instability being addressed - Drs Bolognese & Henderson term these the "complex Chiaris" where there is CCI as well, & I read a paper about the Chiari being what gets them in to see the neurosurgeon, but isn't actually the problem, then the CCI is discovered (if they are lucky). There have also been reports of patients with the appearance of a Chiari which is actually the result of a spinal fluid leak & the brain is sinking downwards. In these cases, when the leak is found & sealed, the "Chiari" has resolved. I do not have one, but my cerebellar tonsils are in the foramen magnum on upright scan. I could probably cover it too but frankly I wouldn't care if my head looked like a second backside if it got me better . I think I have come across some of his material, he sounds good. What level did he suggest fusing you to? B xxx
  23. Dear @Scout - I completely understand. In my case it was like that in the beginning with my family. My siblings and my in-laws felt that I must be either faking or doing something wrong. Even today I find that people not familiar with my illness think that I should " just do more and be more active" and I would improve. What they see is a healthy looking person that is disabled - but I am not blind or paralyzed or have cancer. So why do I mostly stay in my house, do not go to events or shopping with my daughter? --- What they do not understand is that IF we did these things we would be so very ill and most-likely end up bedridden. I have improved since getting weekly IV fluids, to the degree that I no longer have seizures and rarely faint, I feel better and have more energy, I can do chores every day. But I still have to watch what I do and when I do it or I pay for it. For example: on Sundays I have to choose whether I go to church or spend the afternoon with my family, I cannot do both. So people from church do not understand why I am " too sick " to come to church but can cook a meal and play monopoly that afternoon. I understand why they think that. If I went to church and spend the rest of the day in bed they would say: " I just saw her in church and she looked perfectly fine". We cannot win! --- Once I was in an airport in a wheel chair. When I came to the metal detector I stood up to go through the scanner and the scanner guy said: " If you can stand you do not need a wheel chair." I answered dryly that if I had no wheel chair I would have a seizure and never be allowed on the plane. He just frowned. Since we look good and all body parts are functioning we must be healthy - that is the common opinion. I have accepted that this is how it is and no longer try to justify my illness or symptoms to others. Most people know that I have " a condition " and am disabled, that has to be enough, I do not expect them to understand. My husband, daughter and doctors know my limitations and that is good enough for me. You may not be able to convince your family that you are ill and have to use a wheel chair - but so be it. My brother and his wife think that i want attention and that that is why i use the wheel chair. I don't care. I have learned to let that attitude roll right off my back and if you can learn to ignore their comments or opinions your life will be a lot easier. Remember - if DOCTORS do not understand our illness then how cn we expect family or friends to understand it? ---- Hang in there, Scout. If they could live in our shoes for just one day their attitude would change. Be well!
  24. I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick. Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality". I just don't know what to do anymore. It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. Does anyone have any advice on how to move forward? Thanks so much.
  25. For me, I have a slight Chiari, but they decided it wasn't impacting CSF and wasn't worth fixing. I also have the instability that the Neurosurgeon thought was worth fixing. He was planning to go in from the back to do the fusion because he believes it is a better result than going in from the front. I would have had the zipper scar, but my hair would cover it, so it wasn't a big deal. My neuro is Dr. Sunil Patel out of the Medical University of South Carolina. I think he publishes on PubMed if you want to read his stuff. He supposedly specializes in this.
  26. Have you tried florinef or midodrine to help raise your BP?
  27. It is an expected response unfortunately that alpha blockers lower blood pressure and are unlikely to be tolerated by a patient with dysautonomia. I would see if your urologist has any other suggestions that do not interfere with BP. B xxx
  28. The neurosurgeon that I have seen was very honest about both the potential for, and degree of, improvement being impossible to predict in advance of surgery, however he only offers surgery where he believes it has the potential to improve someone's quality of life. He does however specialize in disorders of the craniocervical junction, particularly among patients with connective tissue disorders (ie atraumatic acquired instability) and the majority of those he performs this surgery on have symptoms of cervicomedullary syndrome - predominantly dysautonomia, some have additional neurological symptoms. We did not discuss my concerns about continuing to faint with a fusion if the surgery was not successful at my appointment, as I have not yet decided on the surgery but would definitely be raising this beforehand if I did. Obviously if there was effective medical treatment people would not be having surgery in the first place, so it must be an issue for those in whom the surgery doesn't work. Some patients have much more marked radiological instability than I do, and also have seizures and/or breathing problems, so in their case the decision is more clear cut, it is a difficult one! I certainly intend to pursue exclusion of a spinal CSF leak to the nth degree before deciding on this route, as treatment of this is easier, less expensive & doesn't result in any long term loss of movement, & also my mode of illness onset (Valsalva) fits far more with this - although EDS is a risk factor for both spinal CSF leaks and CCI, and there are certainly patients who have experienced both. B xxx
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