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OCsunshine

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Everything posted by OCsunshine

  1. Oh my gosh, training yourself to stand still and not black out? YIKES! BE CAREFUL!!! I also have NMH (same as NCS) and EDS, I have had the condition for over 10 years. When I start to feel 'better' and want to see how I've improved, I used to be tempted to give myself the "poor man's tilt test" at home (ie, standing still and seeing how long I could last). I told my doc at Hopkins what I had tried and he said NOOOO do not DO that!!! Basically, it's dangerous and it's just going to wear your body down more. I like what was previously posted on this strand- hold me under water longer and I'll learn to breathe under water. That's perfect. ;-) However, there are many other treatment options you could explore. Many of us on this discussion board are on several meds (and yes, it takes us a lot of trial and error to find what works for each of us). I have found a beta blocker to be incredibly helpful to me. I have also used Florinef for over a decade, which makes sense why the steroid helped you earlier.. Florinef is also a steroid. Anyway, carefully building up muscles can help the blood flow (that was already mentioned, too) and experimenting with your diet to see which foods help/hurt you. I also found an Osteopath of Neurology to be very helpful with working out 'tight' spots and allowing blood flow to be free-er. Welcome to the group!
  2. There was one incident several years ago where I am pretty sure I had a blood clot. Can clots work themselves out without treatment? I don't know much about them, but I remember having bad pains (chest pains, tightness, shortness of breath) and it wasn't the usual NMH problems, it was WEIRD and scary. This happened after I sat through a 4 1/2 hour play in a theater. I didn't get up for intermission, so my mom is pretty sure I sat too still the whole time and it caused a clot. After a period of the pain (maybe an hour) and some walking around, I started to feel better on my own so I never wound up going for help or treatment. Now I am very careful about taking 'breaks' to walk around, stretch, move... whether it's in the theater, on an airplane, whatever... I don't want that pain to come back!
  3. I have slight cervical stenosis and was a candidate for the surgery, but I declined that 'solution.' I decided I can live a somewhat 'full life' on my other treatments (meds, pilates, taking care of myself) and I didnt want to risk the surgery. It's very scary since they go digging in a very delicate part of your brain- not something to take lightly! A good friend of mine had the chiari malformation and Dr Weingert at Hopkins did her surgery. She seemed somewhat better for a while, but now - even though she works full time- she has many of the same symptoms and still struggles day to day. I'm sure the surgery does work some people, otherwise maybe they wouldn't do it at all. I just think of it as a last resort b/c of the risks of complications.
  4. Do you think they'd be safe to wear on a plane, on like a 6 hour plane ride? I know long plane rides (sitting still) can cause blood clots. Would compression hose help or hurt that? Just wondering....
  5. Well I used to HATE salt. My mom would salt EVERYthing we ate when I was little and it was so disgusting to me, I'd wipe all the salt off (she has NMH, too, and she just CRAVES salty things). Now that I have NMH and have learned to like a salty diet, I do have salt cravings. Sometimes I buy soft pretzels on the boardwalk just to lick the big pieces of salt off the top (my friends gag when they watch me do that). :-/ My doctor gave me a list a while ago of "salty foods" and it listed them in order from "REALLY salty" to "somewhat salty" and I think pickles were near the top of the list. So they might be a good snack for you. Other people think it's gross and weird, but I think you're normal- or at least weird just like me. :-P
  6. I wear Rx Compression thigh-highs. I find them to be very comfortable. At first they didnt stay up well enough, so I just bought a little bottle of stuff (sold next to the hoisery in the drugstore) called "It Stays" and I dab that on around the top of the hose and they stay up all day and night if necessary. I find they do give me more standing time- less light headedness. I haven't worn mine all summer b/c of the heat, but I'm looking forward to fall and winter now so I can wear them and put them under my jeans. Oh, I also find the 'open toe' to be the most comfortable. The closed-toe would squish my feet in a very uncomfortable way. Good luck with it, I think they're worth a shot!!
  7. Yep that's how I'd describe the 'fatigue' from CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), the otehr half of my diagnosis. I usually say "My BODY is tired" but explain that I am not sleepy at all. Sometimtes my "brain" will be tired (the "sleepy" feeling that normal people get), but not often. It's my body that poops out after minimal activity... resulting in the Must-Lay-Down-Still-For-Hours-Because-There-Is-Nothing-Left-In-Me feeling as if I'd just run a marathon, when really I just finished showering and getting dressed. :-/ You are not alone at all!!!! *HUGS*
  8. So my GP just did a research on my meds... (I'm figuring out how to balance my meds and do what's 'safest' for me/baby for a pregnancy somewhere down the road when we decide to have kids). He wasn't concerned with most of them, except the Florinef. (My OBGYN wasn't familiar with Florinef, so she looked it up in her book and read how it worked (keeping sodium levels up, etc...). She said it didn't sound particularly worrisome and I should stay on it if it helps me be much healthier than without it.) But my GP researched my meds this week and found that Florinef (a steroid) is considered to be a bit riskier than the other meds I am on because it may heighten the risk of the baby having facial palettes. Isn't that interesting?? Has anyone ever heard this?? Of course I am going to try to go off it and see how I do (I'm only on .05 mg/day). But it was such a surprise to me (about the facial palette risk), Just thought I'd throw it out there for discussion.....
  9. Congratulations on rescuing a doggie! How wonderful!!! Sue might be right about him missing his cage... he might feel more safe and protected in a smaller, warm, comfy area with a blankie and a favorite toy instead of having the whole house to run and explore. He might be in sensory-overload. Also, maybe try a noise machine or some kind of air cleaner machine (that makes noise) at night? That could help drown out noises and calm your dog so you can all get much needed rest! -Rachel
  10. I get that as well. Sometimes it's specifically around my head, but other times it's around my whole body. I always thought it was hormones- like Menopause Hot Flashes (even though I am only 25...and I have had these "hot flashes" for over 10 years now, since I have had NMH). It's hard to explain to people b/c I get SO HOT around my skin like you described, but it has nothing to do with the temperature of the air (it can happen in 30 degree weather or 80 degree weather). It's like the heat just radiates from inside my body and then creates the halo around me, like you described. Weird. I know. :-/
  11. For years I was taking 37.5 mg of atenolol twice a day... that's 75mg daily. It worked well for me. I went to a new cardiologist recently and when he saw the high dose of beta blocker he was pretty surprised. I didn't realize it was a high dose until he said something. I got in a funk a while back and wanted to get OFF meds, so I reduced my night-time dose to 25mg. The past month I have been reducing my dose further and further... I am on 25mg in the morning and NO dose in the evening. Results coming soon................
  12. YEESS!!! Light is unbearable! I have extremely large pupils (I often get comments from complete strangers on how large my pupils are). My doctors say it's because I have NMH and the nervous system doesn't function properly therefore it isn't controlling my pupil dilation properly. My blood vessels throughout my body are also very dilated and large (hence the blood falling into my feet and hands when I stand up) so that goes along with the pupil activity. A visor is a great idea, I see that's been mentioned... what about tinted contact lenses?
  13. Hi.. Fellow Dog-Lover here. I love my little dog Lucy, she is a little black toy poodle and she is soooo loveable! She's very mischevious but I love her just the same. She cuddles when I don't feel well, and she doesn't even need walks! She is so small she gets all of her energy out by either running laps around the house (no kidding) or playing fetch, which is super easy for me b/c I just throw the little toys over and over... and over.... We have a situation set up where I don't have to do much to let her outside for her potty business. We have one of those extended leash things (mechanical handle thingy) and it extends like 15 feet. I sit inside the house on a bench by the door and I let the leash go out the door. She goes potty in the bushes by the front porch and runs back inside, takes no longer than 30 seconds. So... she's very low maintenance... which I highly recommend. I can't imagine NOT having a dog for company and companionship. My husband is at work a lot so Lucy and I spend many days together, I'd go insane without her!! Keep talking calmly with your husband. He probably does have good reasons for saying 'no' but talk about these reasons openly. If he's concerned about the obsession starting and he envisions 20 pets all over the place, tell him that will NOT happen and offer to put it into writing if he wants! ;-) And maybe talk about how you'd compromise with the care of the dog- like how exactly you'd let him outside and how you'd bathe him, etc... talk about if you're really capable of doing these things, or if a friend could come help sometimes... start brainstorming together and ... well... good luck! Keep us posted!!
  14. I have flown a few times and have done okay, but my last flight was very scary (to me) b/c of some things that happened on the plane (like coming within 500 feet of crashing into another plane up in the night sky). I am TERRIFIED to get back on a plane, but my husband and I are going to a Convention later this year so I really want to go with him. So...... what is there that will MAKE me sleep for about 5-6 hours?? I have taken things like Tylenol PM, valium, vicodin, darvocet, percocet, nyquil, cold meds for night-time.... most of those things work like "uppers" for me and keep me jittery and awake during the night. I will ask my doctor for ideas and will check with him before I take anything, obviously... but I was just wondering if any of you knew of something that would knock you out for 6 hours? Thanks. -Rachel who wants to stay on the ground but if she has to get up in the air she wants to SLEEP THROUGH IT!
  15. SOooo... I saw a brand new doctor today. (I'm not getting rid of any other doctors... I have a great one at Hopkins and several other docs that are knowledgeable and great with treating my NMH.) Dr Rowe at Hopkins recommended that I see this Cardiologist, Dr Nsah, because he is closer to where I live and I should have a local contact that's versed in NMH. Well... Dr Nsah was VERY enthusiastic and VERY talkative- like SO opposite of all of my other docs. It was quite strange for me!! I told him my story and how I've had NMH for 12 years... have been on the same medicines for just over a decade and have improved greatly and am living almost at a health level of where I want to be... that is, a level I am willing to accept. There is a wrench in the plan, though- we want to have children (at least I do... my husband is hesitant b/c of my health). Dr Nsah set a goal- he wants to get me slightly more stable and then wean me off ALL of my meds! My Hopkins doctor said my meds are pretty safe for pregnancy (atenolol, florinef, Klor-con/K-dur) and it would be too risky for me to be pregnant and NOT to be on any meds b/c my blood pressure might bottom out too much... but Dr Nsah says NO MEDICATION during pregnancy at all. That sounds great to me, BUT it scares me so much!! OFF ALL MEDS? I have been on this specific med combo for 11 years and I feel fairly good most of the time. I hate to mess with that... but I do agree that meds can be dangerous for the baby. I just don't know... I am so confused.... any input would be GREATLY appreciated. -Rachel
  16. Hey this is kind of a delayed response... but I have been thinking about seeing a Nutrionist so I searched for old posts. Anyway, can a blood test really show the levels of all the vitamins in your body? I assume we're talking about a specialized test here, right? Not just what shows up in a cbc? I'm thinking that my docs must have done all this over the last 11 years... but I'm not certain. I watched "House" this week and got to thinking more about celiac disease. I know I've talked with my docs about gluten free stuff years ago, but the concensus was that I have a milk protein allergy, not celiac. I know I have been tested for Chron's (when I was having a major flare up in GI symptoms) and that was definitely negative. Don't know if I've officially been tested for celiac, though? I'm not looking for a diagnosis, I've lived for 11 years knowing I have NMH and CFIDS. But my gut instinct tells me I should have my vitamin levels checked and look further into the celiac issue...? Any thoughts.........?
  17. I have been on K-Dur (now Klor-Con) for over a decade. I take 40meq daily. I have never tried over-the-counter K supplements BUT i do know that one time my pharmacy gave me the generic brand of K-dur instead. The real K-Dur that works for me is a big white pill with some rough texture to it. The cheap stuff they gave me once was a smooth round yellow pill. My body did NOT absorb the substitute/cheap brand at all, I wound up in the ER within a few days. It was awful. Since that episode, I have learned that K is very hard for the body to absorb. So now I stick with the 'real' brand, and always take it with food. That's how it works best for me.
  18. I started out on 5mg (1/2 pill). Maybe that was too much. I just emailed my doctor and told him how I am feeling and if I can lower the dose. He will probably reply within the day..... I started 5mg on Monday. For the first 3 days I had a terrible weird headache. Then when that let up, I just feel... listless. Awful. Depressed. I'm not tired or sleepy but I don't want to do anything. This is unlike me and it scares me. I haven't even eaten ANYthing in over 2 days. Just don't care to. I hope my doc lowers the dose... or I hope this feeling goes away soon..........
  19. My life must be really boring b/c I was excited to see this topic come up. :-P I agree with what others have already said: I wipe down the shower while I'm in it. I consolidate chores like putting things away while I am already making a trip from one room to another. I also fold laundry while sitting down with my feet up. I also do a few things at a time so I don't have a full "day" of cleaning. That would be too overwhelming. Whenever I have a few minutes of energy I will do some dusting. Then a few hours later if I have extra energy I will vacuum a rug. Then the next day I might unload the dishwasher. Then 2 days later I might fold laundry. I spread things out so the tasks stay small. We actually just renovated our entire kitchen and I designed it with my NMH in mind. ;-) You guys will love this: I designed it so that our peninsula bartop creates an L-shaped countertop for the kitchen. Okay, so instead of having the stools on the outside of the kitchen counter facing IN, I put them on the inside of the kitchen facing into the living room. People thought my design idea was weird, but once it was built everyone LOVES it b/c it's great to sit IN the kitchen and socialize with people in the living room. And for ME of course it gives easy access to the stools so I can sit at the counter while I chop veggies and prep foods. I also designed the kitchen so my stovetop is right next to the pensinula so I can sit at the bartop and chop up my veggies and then (without moving an inch) I can look to my right and stir whatever is in the pots on the stove while I'm still sitting. It's the best set-up ever. I'm sure there are more 'tricks' I have... I'll keep thinking... looking forward to seeing other posts, too!
  20. I just started Lexapro 3 days ago. My Hopkins doctor prescribed it, saying he has seen GREAT improvements in his patients with it. Some of his patients have their Orthostatic Intolerance symptoms almost completely gone since taking Lexapro. I was encouraged (though not getting unrealistic expectations) and finally decided to give it a shot. So far I have had some bouts of nausea, though not too bad. But I have had an unrelenting headache. It goes from bad-migraine status to like it is now, just a deep throbbing in the top/front of my head. Annoying! I have already searched the discussion board and read the past Lexapro discussions, so I appreciate what I have already read on your experiences with this drug. I just wanted to post to tell you I am now trying it, too, and would appreciate any encouragement or advice.
  21. I have noticed that I get more headaches in the summer. Being out in the hot weather is sure to bring on a headache for me, usually leading to a migraine. Part of the problem may be the sun, as my pupils are always dilated (weird, I know). But i do wear good quality polarized wrap around sunglasses that help a lot. But the heat just GETS to me and causes that headache that ruins the rest of my day and probably a few days afterwards. Another friend of mine gets headaches when the weather is cold, but that makes more sense b/c when you're cold you shiver and your muscles are tense. That seems logical to me. But in the heat? Why do I get headaches from hot summer days? Anybody else have this problem? Any suggestions?
  22. I had an endoscopy and it was a breeze. It was done in the hospital, I was put into twilight sleep. Of course I remember nothing about the procedure, except falling asleep and waking up. They warned me that my throat would be sore afterwards but I never even had that problem! Let us know how it goes, get lots of fluids and lots of rest.
  23. I have been on florinef for over a decade now... I have been on a dose of .1 mg/day but now am only taking .05mg/day. Even with that low dose I must take a Rx K (potassium) supplement of 40 MEQ daily. I also eat bananas, tomatoes and potatoes as a good source of extra K. Be very careful with your K levels when you are on florinef, it will affect your heart rate.
  24. How long was he on the tilt table? He said that he felt blood pooling into his arms and feet... did they turn purple? Were his feet exposed so you (and the docs) could see the skin color? Just thinking of ideas.... with NMH, my heart rate will usually stay about the same but I'll have the blood pool into my hands and feet and then before you know it I'm very light-headed and my BP bottoms out... that's why I was wondering how long he was vertical. Also, like others said... maybe he had a good day and that's why he could tolerate it. It's a tricky illness. I am hoping that he really doesn't have it, though. Maybe it's something much less complicated that the docs will find out soon. Keep us posted.
  25. I also have Denise Austin Pilates DVD's. You said you were going to try 10 minutes or more every day. Just make sure you allow yourself to take days off. Don't try to do the pilates workouts if you're already feeling really bad. So, like others said... take it at a slow pace, and only do what exercises you're comfortable with. Before I found the pilates mat workouts, I had tried yoga and tai chi videos. Unfortunately I didn't realize that most of those exercises are done while standing straight up and moving very slowly. Obviously that did not work out well, I was fainting right away... so I found videos that are only mat workouts and I stay horizontal.
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