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RecipeForDisaster

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Posts posted by RecipeForDisaster

  1. 4 hours ago, edriscoll said:

    @RecipeForDisaster  There is a great article full of helpful gadgets and tools that can be really helpful https://www.dinet.org/content/living-with-dysautonomia/technology-education/optimized-living/    The article is a couple of years old but it's easy to find updated forms of the tools mentioned.  

     

    Thanks, I forgot about that and will revisit it!

  2. 4 hours ago, Pistol said:

    @RecipeForDisaster - gift cards for online shopping! That way I can buy what I want or need when I do. And I can use it for whatever I may find useful. 

    I do this, because there is so little I want or need. But you know what? I end up using them for tick preventative for the horses, or gifts for the people who got them for me! It’s silly. However, it won’t be wasted like other things I can’t use. Like my favorite ever, a gift certificate for eyebrow plucking an hour from me. I wouldn’t care about an eyebrow if it was the last body part I had left, and I rarely go near there. Thanks so much?

  3. 10 hours ago, JaneEyre9 said:

    An Apollo Neuro may be something you'd like to try. It's a device that softly vibrates to increase the parasympathetic nervous system response. It helps me with managing stress and sleep.

    https://apolloneuro.com/products/apollo-wearable

    They offer discounts around the holidays and a return option if it doesn't work for you.

    (I have no relationship with this company. I just really like their device and have been using it daily for over a year and a half.)

    That is really neat! I had no idea it would work. I am not hyperadrenergic but I have awful sleep, and my heart pounds hard. Thanks!

  4. I never need anything much, so it’s hard to come up with ideas for family to buy for me. I love my electric kettle, aftermarket heated seat covers for the truck, microwaveable heating pads, wraparound heating pad for my IV arm, weighted blankets, cooling items like freezable face masks, and that sort of thing. I was looking for some wearable pill holders so I can more easily carry meds that I might need in a hurry. I have some keychain type capsule containers already. If anyone has other items that really help their comfort or health, please let me know! 

  5. I just did one a few days ago! It was egg white, white bread, and strawberry jam. I could eat them in whatever combination I wanted. I am touchy about eggs, so I had it as a sandwich. You just eat it and then get scanned every so often, and it’s very easy. I think I couldn’t eat or drink for 4 hours before the test (it was at 8:45, so that meant dinner the day before for me - rough without coffee!), and I was out of there by about 1pm. I had an IV with hydration running anyway, but IV access didn’t have anything to do with the test. 

  6. Nope, no vaccines or TB tests have affected my dysautonomia at all. Getting so much as a cold, or infected hangnail, though, makes for a giant flare every time. The flu was absolutely horrible the last time I got it, and while I was vaccinated, the strains targeted that year didn’t match what was circulating. 

  7. I have often thought that there would be a lot of helpful aspects to having something people understood, like diabetes or whatever. I don’t bother trying to explain my conditions to most people. I just say I have very low BP, or I tend to pass out, etc. There are not many support groups, or like you say, fun runs, clinics, etc. Most of my conditions are obscure, and I do think it makes it harder on me. I was dosing out my pills last night, and thought I didn’t have more of one of the anti arrhythmics - I briefly panicked, because I know the pharmacy does not stock that med for anyone but me. There are a few of my medications that have to be ordered every time, because no one else is using them. 

  8. 18 hours ago, rondo said:

    Thanks for the feedback. It seems many people need to come up with some variation of dosing that works for them. 

    My testing has all been done at Stanford. They seem to have a pretty dedicated group of specialists there. It took a long time, but now my case seems to have piqued their interest, so I think I am finally getting somewhere. 

     

    That’s great, I'm glad there’s another place doing this testing now.

  9. 12 hours ago, rondo said:

    Well here is a follow up in case anyone is interested. 

    OI symptoms escalating slowly despite hydration, salt, compression wear and "taking it easy " as advised by my neurologist. (Those measures do help a little) Brain fog, lightheadedness and visual disturbances when upright definitely worse.

    July 6, they did an extended TTT  with transcranial Doppler because they suspected OCHOS as the 10 min TTT back in April was normal. This time I did meet criteria for delayed OH and neurally mediated syncope. 6 weeks later we still don't have CBFV results. 

    They started me on Midodrine 2.5 mg 1-3 x daily along with continued volume loading etc.  Also they are going to do skin biopsies and other tests to look for neurodegerative disease and amyloidosis given my age. (I just turned 65)

    The effect of the Midodrine was quite surprising. I didn't realize how bad I'd been feeling.

    I call them my Wonder Woman Pills!

    It seems to wear off and produce symptom rebound at 2.5 to 3 hours. At that point I need to take a rest break. The doctor said I can repeat the dose at 3 hours, which I only do if absolutely necessary because I am concerned about building a tolerance to it,

    and I don't really have a diagnosis yet so not sure if overdoing it could cause harm. BP has been fine; they warned me to monitor. 

    Has anyone else had Midodrine work this way for them? And if so, did you need escalating doses over time get the same effect?

     

    I’m so glad it’s working for you. That’s a low dose - they started me on 10mg and I can’t tolerate that much at a time. My condition keeps getting worse, so yes, I do need more and more of it. But I can’t handle more than 2.5mg at a time, so I take it almost hourly. I avoid side effects and still get the benefits even if it’s a total pain. I really wish they had a low dose extended release, so I could take like 30mg a day but have it release very slowly. It does help me, just not enough. That’s me, not the med. I am on a lot of other stuff, too. 
     

    Did you have your testing done in Boston? I did!

  10. It’s expensive. I think my copay is $85/month. It does help my orthostatic hypotension and dizziness, but it doesn’t help me when I’m just sitting or laying down, and I don’t feel good in any position. So, it’s very helpful when I need to do more standing, bending, or changing position, but I don’t take it regularly because I find it isn’t that helpful for my usual activities. Oddly, it has not helped my low blood pressure, just my symptoms. 

  11. That’s wonderful! I should try a little diltiazem again. I have 30mg capsules. I was on it for rate control originally, but I did better with a beta blocker for that. I can take them together and got the go-ahead. I tried 30mg up to 4 times a day and then switched to 120mg ER.

     

    I didn’t remember that nimodipine was good for migraines. I could use that too!

  12. 2 hours ago, Sarah Tee said:

    Back story: I found out that I had this type of OCHOS by happening to take a calcium channel blocker for my blood pressure. After being on it for a couple of days, I started to feel much better. No more horrid drained feeling in head, less fatigue, able to shower and cook a meal without crying with exhaustion, doing regular exercise for a week, etc. Long story short: vasoconstrictive OCHOS is the only condition that matches my symptoms and improves with CCBs.

    Good luck! You can also say something about CCBs being benign and that they are not exactly a drug of abuse. My specialist thinks galantamine is the gold standard for this type of thing, but my PCP says Nimotop is also very good for cerebral use.

  13. 4 hours ago, MikeO said:

    not sure if Boy's are allowed to wear these?

    Maybe wear a kilt (or, okay, regular shorts, like mountain bikers do) over the shorts? I am not sure about the halter, because it’s impractical enough for me! I don’t want to wear that much sunscreen unless I’m going in the water, in which case I will just wear a bathing suit.

     

    I bet good money they make shaping underwear for men now. I am not googling that for you haha

  14. Potassium highs or lows do actually show up on EKG, but people can misinterpret these signs. And yes, it’s possible that the imbalance was corrected before you had the bloodwork.

     

    Low sodium is not normally a reason why we’d get infusions of saline, LR, etc. I actually do have low sodium, but most people like me don’t. It’s just a blood volume helper in my case. It basically gets me out of shock for a bit. It sounds like your doctor isn’t that supportive or knowledgeable, unfortunately. It CAN be difficult to get IV hydration prescribed, and I don’t think it’s right for most people as a regular treatment. It's close to a last resort for me - I’m on a ton of other meds and interventions.

  15. 8 hours ago, Pistol said:

    @Sarah Tee I am on a CCB for HPOTS and my autonomic specialist was the one who first prescribed it, many years ago. I know you dont have POTS due to your HR not being elevated, but the principle is the same. Even today doctors that are not familiar with my case tell me if I would stop the CCB  I would not need IV fluids. Haha, the days I forget to take it I am horribly ill! ---- As to how to address the doctor to diplomatically "rub it in" ... I have no clue! I have tried in the past to go back and explain to them why their approach or suggestion to my treatment was wrong but it never ended good. Even if it is perfectly worded most docs become very defensive when their ego gets bruised. THEY went to med school and THEY know what to do, WE just need to submissively be thankful for their time. Lol.

    Oh, for the times an ill-informed doctor or nurse told me that I am hypotensive because of my beta blocker! Oh… that’s why I was super hypotensive before I started it, but had a HR of 180 and intolerable pounding, thanks! Almost none of my doctors have heard of HYCH, OCHOS, etc. Dr. Novak certainly does :) He had me try galantamine, which gave me so much worsened insomnia that I couldn’t really trial it properly. I didn’t feel a big difference while I was on it, but maybe I needed a higher dose.

  16. 8 hours ago, kmichaelson said:

    Thanks so much to all of you for your help! This is such a caring and knowledgeable community. 💖 I'm feeling more positive about things today, but I was just so shocked and discouraged by how completely unhelpful my doctor was yesterday. I appreciate all of the information about how you get IVs and am going to look into some of the options you all have mentioned. Great advice about a local Facebook group as well. You all are great and have made me feel more hopeful!

    Glad to help! This is really a supportive and smart community. 
     

    Some of us find that slower IV fluids and using LR instead of NS are more beneficial. It stinks that my 2L takes 16 hours or sp to run in, but I get longer lasting effects that way. Just in case you get it quickly and find that it wears off too fast.

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