Steph89

Oh wow! I shouldn't be surprised anymore but I really thought I was the only one who gets that weird buzzing feeling!! It's usually accompanied by my head feeling hot, like my brain is overheating.  When it happens it's pretty much only at night but I've noticed if I go too many nights with poor sleep or pull an all nighter it will happen during the day. I never thought to connect it with dysautonomia but it makes so much sense.  I've never brought it up to my docs because I couldn't figure out the words to really describe it so thank you guys!

I just started taking midodrine 10 mg 3x daily on Saturday per my cardiologist and it's helped raise my bp a little (instead of 70-80/45-60 it's now 80-90/60-65). It's enough that I feel just functional enough again. Has anyone else noticed lasting headaches while taking it? I've been getting them usually as the third dose is starting to wear off but they last long after. My cardiologist is a little skittish when it comes to me calling him with side effects and tends to immediately stop whatever the change is altogether.  I don't want to bring it up to him if it'll stop as I adjust to it...I'm also on propranolol 20mg 2x daily, adderall & adderall xr (I work full time-four long 10's).  I've been feeling so discouraged lately and I just want everything to just calm down for a minute and let me live, breathe and sleep like the normals. I'm tired of fighting!

I finally caved to my inner LOL (little old lady) and tried compression stockings at work this past week. Since the arrival of warmer weather my symptoms have magnified.  I have IST with hypotension which is exacerbated by Propranolol and it's been a struggle at work to the pooint where I've had to leave because my blood pressure was so low I couldn't function.  In desperation I tried the compression stockings not expecting too much but wow! I sit at a computer all day and I felt so much better! No dizziness when standing up, no wooziness after standing for a while, I even think it helped me from feeling like I was burning up! I highly reccomend giving it a try...I got the toeless thigh-high 20-30 mmhg.  With my symptoms, compression stockings, and eye problems I think I'll just retire 40 years early and move to Senior Living haha

On another note, I planning a vacation to Florida in early summer next year and wondered if anyone has any tips on dealing with the heat I'm sure to encounter on the beach and walking around outside aka no AC? Thanks everyone!

So glad I found this!! I normally run right around 97.7 and start feeling like I should have a fever around 98.5. I don't think I've gotten any higher than 99 since I was a kid (pre-dysautonomia).  I went to WIC today got a dx of a uti with a 98.6 temp (felt nauseous and crummy). Much later after getting home and ~getting sick~ I was shaking so hard I took my temp again and it said 95.9! Has anyone had their temp tank instead of rise?

On 3/11/2017 at 11:06 AM, dancer65 said:

I had this procedure, They did not find any endometriosis at that time but I was told it can sometimes be hard to see . As my gynae problems increased one of my  diagnoises was adenomyosis basically endometrium breaking through the lining of the womb feel free to ask  me your question happy to help if I can ! 

This is my story lol I'm going in the end of this month for a hysterectomy due to adenomyosis....It can't come soon enough! First procedure since dysautonomia diagnosis so I'm a little nervous about the anesthesia.

I would talk to both your dentist and PCP about it possibly being referred pain either from another tooth or neck/shoulder muscles.  It might be worth it to see if a massage therapist or chiropractor is warranted!  A root canal removes the nerve in the tooth so unless there's something wrong (like if the tooth was perforated, cracked, etc and infection set in) the cause of the pain shouldn't be coming from that tooth.  I've had weird tooth pain over the past 1.5 yrs and thought it was from changing an unrelated med (2 dental exams cleared me of cavities) but your question does makes me wonder now if it isn't dysautonomia related?

3 hours ago, angelloz said:

Welcome and thank you for sharing your story. I can really relate to the temperature swings. I often ask someone else if it is actually really hot, ( or cold ), in the house because it is probably just me. When I get severely chilled I have to take a hot shower to bring my body back to normal, I just can't warm up any other way. If I'm melting, I hold an ice pack against my body. When at my worst I watch a favorite mindless TV show, meditate, bird watch out my window. Some days it is just plain hard to accept. I hope youfind the medication that helps you the best. Having a doctor that really listens is half the battle :).

Can I ask if you work and if so, how do you handle the temp changes there?  My (post menopausal) coworkers are forever laughing at me for turning around and asking if anyone else thinks it's "disgustingly hot in here or just me" several times a day!  I'm curious about meditation...Having ADD, the idea of it has always mystified me a little.

2 hours ago, kalamazoo said:

Your story kind of sounds like mine and I'm also the same age, and I'm also on proranolol but I have hyper pots. I get very tired from propranolol and I honestly NEED about 10 hours a day to function. It's not me being lazy, but I genuinely need 10 hours to be able to function or else I'm just too tired during the day to do anything. I've struggled with depression for a long time because of this disease and was hospitalized once for issues related to suicide so I really know how it feels to be down because of the life adjustment. Accepting your limitations will be the best thing for you. My life revolves around my disease. I've even started listening to music that helps calm me down. I don't do doctor apts in the morning, I don't do anything late, no caffeine, I changed my diet to vegan and gluten free and I feel way better. I would look for ways you can improve your health in general as well. I take vitamins, and eat protein shakes and try my hardest to eat well, get enough rest and try not to get stressed. It's so simple but it really has helped. This site also helps, knowing you're not alone is bittersweet. But we all understand. I had to made adjustments at my job and at school too but it's best to always be honest about your limitations with employers and anyone really. I turned to art though. When I paint, I don't think at all. Literally at all. It's the most soothing thing, I just paint for hours with some music on and I forget all my issues. I do have leg pooling so I have to be carefu lwith that but I drink a ton of water and that seems to help. Really I would suggest taking care of yourself in every possible way you can. Dont' feel bad for feeling tired, it's just part of it, especially after you take propranolol. Don't feel bad for not having the energy to do things, it happens and you would probably feel worse if you forced yourself. Also try and get a support system, I have my dad who is my rock, if you don't have anyone maybe look for a friend on here.

This was so calming to read...I think I need to make daily care more of a priority?  Like you said, it's simple adjustments I just have to actually do it.   I think you're the first person who's told me not to feel bad for being tired so again, thank you  

After combing through this fantastic site I figured it was time to start interacting .  I'm almost 28 and was officially diagnosed with IST last summer after years of on-again-off-again symptoms and testing.  I now have a wonderful cardiologist who was the first doc to tell me right off the bat that it's not all in my head, caused by anxiety, or my ADD meds like every other doc had told me.

When I was around 13 or 14 I started getting these awful, pounding headaches that increased to several times a week (made worse by standing). I would also feel really weak in the legs and head, especially on standing. It's now second nature to stand up, walk a few steps, then stop and bend at the waist until the tunnel vision goes away. Other symptoms include low bp (~90/60 without meds), resting hr 90-100, inability to regulate my temp (I can go from shaking cold to melting in a snap), palpitations, sob, and terrible sleep.

After getting diagnosed, I was put on propranolol and that's helped my hr but I still get palpitations and side effects of mild to extreme fatigue and really low bp (~65/45). I've upped my salt and water intake which helps some and I prop my feet up at my desk job.  My cardiologist tried switching me to Corlanor/Ivabradine but it made me feel so sick and gave me a nasty headache so back to the propranolol it is.  I just had my first appointment with an EP this morning and, again, he was wonderful! He agreed with IST diagnosis and is very against ablation for it.  He wants me to do a TTT and start playing around with different meds to find one that works better.

The frustrating thing I guess is learning that I really do have limitations (not laziness), how to live with them, and that it's a lifelong condition-symptom management only.  I don't have a husband/SO and no kids so aside from parents about 20 min away, I'm on my own which gets a little depressing sometimes (thank God for the internet). Are there any tips anyone can give that have helped keep spirits up? It's kind of a waiting game right now for me and I really don't have much energy at all.