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Everything posted by CallieAndToby22

  1. Wow, we have very very similar stories. I got sick at 17 too and prior to that I was super athletic and musical and sociable and tons of water sports and hiking living in Florida. I understand much of what you describe. I've been in some long term relationships but my health is difficult or the person can't handle it. My high school sweetheart and I dated for 4 years and always talked marriage but one day he's like, "I thought you would get better and you're getting worse" and that was it. And I've gotten better and worked really hard at something else and then now I'm bed bound and like you s
  2. I don't know. Mine tend to get worse at night. Could it be hormonal? Or medications you take?
  3. When I got sick with dysautonomia I later developed OCD. Horrific but I went to a clinic and worked really hard to get better. But as I've declined drastically these past 6 months the OCD and anxiety are horrifying but they are physiological like you said. I was treated as a psych patient for years starting as a teen before being properly diagnosed and nothing ever helped. It's odd but the OCD I have is only focused on my bladder (I have IC) and my sleep problems but I mean IC is so so so bad who wouldn't be frightened? And these constant adrenaline surges. Saline iv's really help me more than
  4. Oh it was horrible, I just got back on them and I feel terrible. It's very difficult.
  5. Alright so many people are wondering about this, so I'll give an answer. We never got a return phone call but I emailed the research team (accidentally) and they told me to at least skip the evening dose but preferably they want any medications/supplements affecting the autonomic nervous system (blood pressure and heart rate) out of your system. So going by the half lives of my meds I needed to get off of them for 3.5 days before any testing. One of them had a really really long half life so there wasn't anything I could do but I still discontinued it for testing purposes.
  6. I'm going to look it up. He kind of just went through all the different treatments like botox and interstim...etc. Edit: Ah I have seen different people at the urology place with that but it was never discussed as an option for me. Thanks, something to bring up.
  7. I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. Trazodone is a good medication for sleep, I take some at night.
  8. She's usually full of fluffy fur but it's summer time in Florida and it's better that she has her shave, hahaha, but she hates it aesthetically but like sit for the coolness.
  9. They're actually real eggs so just a normal sized egg.
  10. Essentially all vasoconstrictors can potentially decrease cerebral blood flow in *some* patients. Every stimulant I've ever tried makes me very ill. I even tried Northera and I got very dizzy, fell asleep, woke up super dizzy and faint. Vasoconstrictors also make it very hard for me to urinate and I already have bad IC. They help some people and other it hurts them and Northera never even helped my blood pressure...... It would be nice to discuss what patients do when we can't tolerate stimulants, vasoconstrictors, but need increased cerebral blood flow. But again, we're all different and the
  11. I was blessed to sit outside the other day for a little bit and got a couple shots. My border Aussie is truly camera shy and furious about her summer shave. lol.
  12. Hello just wanted to wish everyone a happy holiday! I do this group online just for fun and we get photo assignments so they wanted eggs in black and white. The eggs are from my late grandfather's navy travels, antiques hand painted eggs from Japan. Then my favorite candy.
  13. Does seem like we have some things in common, which is not good for either of us. So my sleep study experience was a nightmare, I was lucky to fall asleep at all. I have horrible Interstitial cystitis and bladder problems related to dysautonomia and my routine at that time was go to the bathroom over and over and over till I wasn't in pain and could fall asleep, now that creates a huge problem in a sleep study. I knew one of the girls working there and she showed me how to unhook myself b/c they were tired of coming in and out!!!!!! So I finally fell asleep for 3 hours and they said there was
  14. So I haven't had real sleep in daysssss. And then I'll have a good night then it goes back to horrible. Sleep was one of the first things to go when I got sick as a teenager. This constant feeling of running on adrenaline doesn't help. The guanfacine I was prescribed is making the insomnia worse. Something that actually helps is saline iv's. I'm on a lot of sleep meds/downers and still doesn't help. When I did my sleep study at least a decade ago it showed extremely fragmented sleep and my mean HR was 90 at times in my sleep reached 120, this lead to me seeking a dysautonomic specialist and th
  15. I did start a thread on this sort of recently. It's under the chit-chat forum and titled: "Bathing is very difficult for most of us. What are some quick hygiene tricks to stay clean and looking decent?" I chopped my hair off to make it easier to maintain and dry shampoo is a must but some people make it and I bought all natural to avoid chemicals. I used to very much be into fashion most of my life before ending up bedbound. The key is to be comfortable. So I ended up thrift shopping and buying a lot of beautiful flowy dresses which is better for IC as well and wearing colorful tig
  16. I have blood cancer and an immune system that doesn't function properly b/c of treatment. So it's very frightening for me. I quit doing flu shots b/c they made me so sick.
  17. Nice information. Someone online said they were allergic to the actual ingredients in the vaccine.
  18. I have some indoor plants and the succulents especially don't require much care at all! I think succulents are really neat.
  19. I'm not ruling it out, I'm merely pointing out how it can affect the brain. Another member and I were discussing why stimulants and vasoconstrictors make us both very very ill and he/she pointed out that caffeine at certain doses a day decreases an average of 27% of cerebral blood flow according to government research articles and studies that can be found googling. I'm not telling people to stop using it b/c my mom is an RN needs it and drinks it every morning; I'm sharing information that may be helpful. Our discussion on this is under the food sensitivity topic. Last time I was on vacation
  20. Thank you so much this is very helpful. I'm sorry you had to drive 4 hours! And I am the same with you, I don't retain fluids and it just makes me go to the bathroom more which makes me worse but my body does retain the saline iv's.
  21. I asked my local cardio for the saline iv's religiously over the years b/c I've had them in the hospital and elsewhere but she always refused. My PCP will send me to some place one every 2 months but it only helps that day and I'm back to crazy sick but the saline iv fluids seem to be the only way I can retain. I just don't know how to get any medical professional to agree to it..... What was your process? I have terrible syncope and seizures every week so it seems like at this point it would be good idea. A friend of mine had a very difficult time making this happen for herself but it helps h
  22. Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt ta
  23. Yea it's really hard to do but a lot of my friends have to take cool showers. Ugh.. One of my friends got into a hot spring one time and his heart was racing and he got really sick.
  24. Dysautonomia itself can cause horrible fatigue. I have fatigue and really bad post exertional malaise. One thing to note, if you shower with hot water it does mess up the autonomic nervous system and for many people makes them sick/fatigued; I've heard some patients take cooler showers and sitting on a shower chair. Dr. Thompson in Pensacola used to go around wearing an ice vest to keep himself cool, something about the heat is not good but we both live in Florida so...
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