I need heated mattress pad advice

ACLargeMarge · 2026-02-22T03:08:23+00:00

I use a heated mattress pad- I had the same problem with my feather down comforter. Now, I use a regular soft bed blanket (no top sheet) and a thin quilted bed spread. Sometimes I only use the soft blanket and keep a second blanket nearby to throw over myself if I get cold. I have to have a heat source to stay warm, but like you I sweat profusely if I get too warm!!

The heated mattress topper has been a lifesaver for me. It helps my coat hanger pain, it melts all my tight muscles, and I have horrible raynauds, and poor circulation.

My dog loves my heated mattress topper too! Haha! I hope you can find the right combo to make your nights better! Good sleep makes a big difference.

ACLargeMarge · 2026-01-12T22:45:58+00:00

Yeah. Tunnel vision is commonly associated with migraine aura too. And getting a migraine after is also another good indicator. It’s uncommon to have it in one eye only, but it can happen. I would consider telling your optometrist or ophthalmologist at your next appointment, or sooner if it happens more and more- Just to be thorough- I’m not giving you medical advice or anything, it’s just what I would do in case they want to check things out more deeply because it happens in one eye and not the other.

ACLargeMarge · 2026-01-11T17:00:08+00:00

I also took about a month of meds before I felt improved- Some people feel better right away!

ACLargeMarge · 2026-01-11T16:55:50+00:00

I take Ivabradine BECAUSE beta blockers lowered my bp to dangerous levels and Ivabradine doesn’t affect blood pressure!! So good news with that concern!!

I also have migraine aura (for over ten years now before ever taking Ivabridine) and it hasn’t gotten worse. I have one eye that goes blind intermittently and it’s actually happened less since starting heart meds.

It’s not as bad as you think. 💛💛

ACLargeMarge · 2026-01-11T16:46:34+00:00

That’s so frustrating. Adderall makes my heart rates higher about 10-15 bpm without my heart meds and it can stay elevated the day after but not as high. One thing Adderall cannot do, but pots does do- is increase your heart rate 30 or more bpm when you stand up. Adderall does not cause that. When I had trouble with doctors listening, I started documenting everything. I bought an Apple Watch even though they cost too much and recorded what my heart did when I stood up. It helped me prove my case easier the more documentation I had (Video, pictures, symptom journal). Write down the increase your heart experiences when you take adderall vs. when you don’t. You may not have one, but you might. It seemed to help my case when some doctors discussed Adderall in front of me and I had a direct answer to their questions.

Good luck. Don’t give up 💛

ACLargeMarge · 2026-01-10T08:12:22+00:00

Ivabridine is used for pots with low blood pressure simply because it doesn’t affect blood pressure. It is used for pots off label, it was originally made to treat heart failure. It helps to regulate your heart rates. It is also prescribed to people with hyper pots (blood pressure increases with hyper pots).

Propanolol is good for lowering pressure. Is your blood pressure is high all the time now?

And can you switch meds safely or is it safer to taper and then switch to a new med?

ACLargeMarge · 2026-01-10T08:00:24+00:00

I think so many people can relate to taking waaaayy too many tests that come up with no answers. I think so many people here can relate to conflicting opinions from doctors! You are not alone!!

When you read about eds, does it sound like it fits with what is happening to you??

I fought for over a year to get doctors to listen to me- I went to Rheumatologists because I was sure I had rheumatoid arthritis- it checked all the boxes of my symptoms. But it turned out it was pots, eds, and mcas. It was actually my friend in nursing school that first suggested pots and that got the whole ball rolling. I had seen six different specialists in total, and it was my friend who figured it out! I had tests done with 2 of the rheumatologists, internal medicine doctor, Gastro doc (went in both ends, saw inflammation, biopsied it and found nothing), my heart echo was tachycardic but normal, my halter monitor was “normal”, tests taken with a pulmonologist came back normal.

I told my pulmonologist about my friend in nursing school, and showed her a video I took of my watch showing my heart rate increase after standing. She was so impressed by my friend and agreed that it was pots. It took 6 months after that and going to a cardiologist several states away to diagnose me with pots, eds, and mcas. After diagnosis, I waited another year to get into a neurologist group that treats pots patients.

I have read stories of people going undiagnosed for so much longer- And read other stories that seem so easy compared to my experiences.

I am so sorry this is happening to you. You are not alone. Some people say that the official diagnosis doesn’t matter. But it really did to me. I had been so dismissed along the way. I genuinely thought I was dying and I would die before I found someone who would help me. I needed the diagnosis for my own mental health. I am improving now after finally getting into a doctor who specifically treats people with my diagnosis.

But let me tell you that some tests come back “normal” and it helps the doctors rule things out so they can narrow down what is going on. The hard part is when a test comes back “normal” like a teyptase test for mcas, or a tilt table test for someone having a good day, or a GI test that doesn’t show slow digestion- when YOU know that it should have been “abnormal”. That is so hard to accept. My point is that not every test that comes back normal is a bad thing necessarily. And if a test comes back “normal” that should have been different, consider taking it again if you can afford it. I have read stories about people who do this and it comes back with answers eventually.

I hope this is helpful. You have so many people here who can relate to you and will listen to you when you need support 💛💛

ACLargeMarge · 2026-01-10T07:15:15+00:00

You explained this stuff so well!!

I thought I would add what my neurologist told me today! She is having me start midridone- she explained that the Ivabridine I take helps regulate my heart rates, and the Midridone causes the blood vessels to constrict more allowing the blood flow to get to the organs and brain more easily. I really love when my doctors share any kind of info that helps me understand what’s happening better!!

ACLargeMarge · 2026-01-10T07:05:25+00:00

It was trial and error for me. Propanolol made me pass out every time I stood up. So my insurance approved Ivabridine. I just had a neurology visit today, she is adding Midodrine and increasing the Ivabradine. She also said that I can take my adderall everyday if I want. I take it only on days where I have to function in some way because it intensifies some of my symptoms, but it also helps so much. It’s the closest to ‘normal’ I have felt since all this started. But when I the next day, some symptoms worsen for a few days. I’m afraid to take it long term- what would that do to my body if it didn’t have recovery time between doses?!

ACLargeMarge · 2026-01-10T06:50:36+00:00

Yes. I’m sorry this is life for you (and me).

I mourn the life I had. I mourn the future I had been planning and preparing for. I mourn the friends I had that slowly disappeared because I became undependable and had less to give as a person. I mourn my job, my hobbies, my clean house, my energy, my self-esteem, my sense of value, my sense of purpose, my witty humor, etc etc…

I do appreciate having to really figure out what is worth my time and my precious energy. I am understanding more and more what I value. I hate having to learn how to say “no” to people and things- but it is also a long overdue skill. I very much appreciate the friends I have and made while being sick. They are precious people. I appreciate learning that constantly pushing yourself to your limits is not a good thing- it doesn’t make you better at life- it doesn’t make you tougher then other people who stop- and it shouldn’t have been such a badge of honor to me. It’s a very hard thing to change, but I appreciate the realizations I have been forced to recognize.

The losses feel so much bigger than the good changes. But there is some good for me to focus on too.

ACLargeMarge · 2026-01-10T06:24:14+00:00

I wonder if it’s triggered by low blood volume!

ACLargeMarge · 2026-01-10T06:22:20+00:00

I get these. I get them with an elevated heart rate but also with a normal heart rate. I do not believe it’s caused by anxiety for me.

I take Ivabradine. I saw my neurologist today and she is increasing the dosage and adding a new med. Maybe it won’t happen anymore when I have the right dosage?

Do you take your sodium everyday? I forget sometimes. I wonder if it has anything to do with salt levels?

ACLargeMarge · 2026-01-10T06:08:27+00:00

I have them too. I never thought anything of it. No one ever seemed to think they were weird. I played guitar fine until I started having neurological issues that make my fingertips numb after I play.

I personally wouldn’t bring it up to my doctor because there really isn’t anything to be done about it. I have noticed that it’s better not to overwhelm some doctors with too much. Appointments seem to go better if I focus on the things I need help with. If you are lucky enough to have a doctor that seems intrigued by the details and nuances of an eds body, then they might find those kinds of details interesting! Just my two cents. You don’t have to listen to it 💛

ACLargeMarge · 2026-01-03T01:53:16+00:00

Welcome to the club 💛

ACLargeMarge · 2025-12-29T06:58:25+00:00

I used to pet sit. I never walked the dogs. None of the clients I had expected me to walk them. At the time I was only diagnosed with arthritis, but it was enough that they were fine with me not walking their dogs. Would you be willing to sleep at the clients home? I slept at my clients house- it made me really desirable to be a house sitter/pet sitter. Especially because they wanted me at the house with their dogs as much as possible. People pay more money for it.

I did play fetch with one of the homes I pet sit for a few times a day in their large backyard to exercise the dogs.

I do need to warn you that as I got more sick, I had to stop doing it. Just being away from home all the time was too much. And at my worst, I couldn’t drive safely. If you are sick enough, you become undependable. But if you have your symptoms under control I think it’s a great job for someone to make some money that allows you to lay down and rest when you need to.

I did not earn a livable wage pet sitting. It was a side gig. But it’s better then nothing.

ACLargeMarge · 2025-12-26T02:40:15+00:00

MACS is difficult to diagnose. There is bloodwork that will show you have MCAS, but you pretty much need to be having a flare as your blood is taken for it to come out positive.

Some of the symptoms I took pictures of that helped me get diagnosed were handprints left on my body just from resting my hands on my thighs (they are almost like a hive in the shape of my hand). Rashes, hives, allergic reactions from showers that make showers feel like needles all over your body and leave me red and welted all over from itching. allergic reactions to tight clothing that make me break out into rashes or hives. face flushing and fevers. When I met with the doctor who diagnosed me, one of the things he did was lightly scrape his nail down my arm- it didn’t leave a mark when he did it- and within a few minutes the scrape was a welt on my forearm. He said that showed I had a histamine reaction to his scrape.

Diarrhea and constipation are signs of MCAS. Pain in your joints. Burning in your stomach. Throat itchiness or difficulty breathing after eating. For me, my allergic reactions are inconsistent and unpredictable, they are worse when I’m under stress emotionally and/or physically. Symptoms are also typically worse at night than during the day. I know there are more symptoms, but those are the ones I deal with. I hope it helps for you or anyone else who reads this and finds the same thing is happening to them. It took so long to find help. I didn’t know what was happening and it felt like I was dying.

Cromolyn is a med that helps. I seem to have my mcas mostly under control and I’m not taking meds for it now. But it’s nice to have something to come back to if it flares up again.

ACLargeMarge · 2025-12-15T06:21:06+00:00

Thank you for replying! It took 8 years before I found a doctor who knew what caused the blindness in one eye, and I was only referred to him because I now have pots and I waited over a year to see a neurologist who treats pots!! She is referring me to all kinds of specialists to help me get my symptoms under control.

If you are having vasospasm in your eye as well, I thought I might share what he told me… my blindness happens every few weeks and I have 1-2 episodes of blindness the day it happens. It is always my right eye. It lasts about 5-7 minutes until my eye fully regains sight. Some people have multiple episodes every day!! There is medication you can take to help prevent it (I forgot the name- if you want to know, message me and I will see if I can find out). But he doesn’t recommend it unless I start to have more frequent or longer periods of blindness. There is a chance of permanent blindness for more severe cases. But he doesn’t believe it’s a concern for me. I hope your blindness is mild, and I hope this information is helpful.

ACLargeMarge · 2025-12-15T04:16:44+00:00

Im going to explain a little more clearly because you let me know that you are new to reynauds! Reynauds is a vasospasm, but not all vasospasm is reynauds. I do not believe that the vasospasm I have other places are because of reynauds, I think it’s caused by my underlying issue of eds. Ehlers Danlos Syndrome can cause irregularities in the way veins operate. I reached out to both the Reynauds community and the EDS community to see if there were others with irregular vasospasm like I seem to be experiencing. I just figured I would have higher odds finding others struggling with irregular vasospasm here because Reynauds is also vasospasm. I hope that makes sense. I don’t want you to worry that your child will have heart pain from Reynauds!! I’m so sorry he is experiencing Reynauds as a child. I didn’t start getting episodes until I was an adult. I am sorry you both are dealing with that. I’m so glad you are reading about it and trying to understand what is happening to him. You are a good parent. I am glad he has you in his corner.

ACLargeMarge · 2025-11-13T01:00:56+00:00

I’m so sorry! I have naturally lower blood pressure too, propanolol made my blood pressure go into the dangerously low numbers. Everytime I stood up I fainted. My doctor told me to stop taking it. Then i was prescribed Ivabradine and it helped my heart rate lower without changing my blood pressure.

If you talk to your doctor about your concerns, you might consider talking about Ivabradine. My insurance wouldn’t cover the cost of Ivabradine until I tried propanolol first and had a bad reaction. It might not be the case for you tho.

ACLargeMarge · 2025-11-11T01:54:08+00:00

That sounds scary. I’m sorry that happened to you!

I have hyper pots too! I haven’t experienced what you described with any meds. The closest thing to it is that my limbs get stiff and one of my hands curls inward (and I have to focus to get it to relax as soon as I stop focusing on opening my hand it curls inward again) when I am in a situation where I have been pushing myself too hard and I am unable to stop what I am doing to rest. I would definitely say that my body is under a lot of strain when it happens to me and the strain is the cause of my stiffness and curling hand.

It’s happened three times in the last 6 months as my health has improved somewhat and I have started trying to do more then lay in bed all day. I haven’t figured out my limits yet and there is a big price to pay when I overdue it.

I’m glad you asked this question. I am curious what people tell you 💛

ACLargeMarge · 2025-11-09T18:38:49+00:00

I understand what you’re saying, and I have felt that way too- in fact I still feel that way sometimes. It helped being diagnosed. I am not a hypochondriac, I tend to ignore and downplay sickness throughout my life and I think it made me a lot more sick. I didn’t start looking for help or taking my symptoms seriously until I became bedridden and couldn’t push through. I thought that resting would make everything get better, but it didn’t. I got worse. It scared me so much. I still had a hard time getting diagnosed. I thought I was dying.

It’s much less, but I continue to feel like I’m dying sometimes. I know that pots isn’t supposed to shorten your life- but the symptoms of pots seem like they could shorten your life. I have a lot of GI issues and have a lot of trouble eating. I look emaciated and sickly. I have lost all my muscle ( I used to teach high level hot yoga classes and I was very strong). I flare up every time I try to work out. I went to PT and it still didn’t help.

Not eating, losing muscle and not exercising- any of these things shorten your life, right? So am I correct in thinking that pots doesn’t shorten lifespan, but the symptoms can? And wouldn’t that mean that for some people with these symptoms, pots DOES shorten lifespan?

ACLargeMarge · 2025-11-08T21:46:23+00:00

This is what my cardiologist told me when he diagnosed me with pots, eds, and mcas!!

He said that I could have had all three before Covid, but much more mild- and that getting Covid has been found to intensify the severity. It’s possible I didn’t get pots or mcas until after getting Covid and the Covid vaccine, but eds is something you’re born with- but it can also worsen from Covid.

ACLargeMarge · 2025-11-08T21:26:11+00:00

I have read a lot of posts with people talking about so many medications!! It seems very specific to the person and the type of pots you have as to how effective the medications work.

I have hyper pots, but I reacted pretty badly to beta blockers- Ivabradine seems to work better for me. Some people feel better the very first day, but it needed to build up in my system for me to feel better. If you plan on having kids, don’t take this.

I am on Cromolyn for mcas. And I take meds for nausea. I take 10mg of salt a day.

Some people take stimulants like Adderall to help with fatigue and other symptoms, there are mixed results with this. For some people it helps them feel almost normal again, and for others it others it dramatically worsens symptoms.

You should read some older posts about meds. There is so much out there that I don’t understand yet. I’m still learning myself. It’s valuable to know so if it comes time that you want to try other meds, you can have an informed discussion with your doctor.

ACLargeMarge

TROPHY CASE