The Latest: Sudden Weird Sleep Problems & Breast Issues?

[sisblostg]

Getting enough sleep seems to be a big factor in how well my POTS is managed.

At the end of 2012 I was having more trouble then normal sleeping because of pain. There was some swelling on my left upper flank (my dr who is never really concerned about much, was concerned over this but after all tests came back ok & the sweeling went away he let it go). I then had to admit that I had a sudden increase in my breast size. 4 years ago I had a sudden jump of a cup size and it came with 4 months of swelling and pain that went away but my larger breat size remained. This time my breast size went up 4 cups sizes in less then 2 months! Mamogram, ultrasound, blood work normal, just pain and some very large breasts. If this change is permenant I have no idea how I can live with my new chest (36G) and Im normal height weight BMI like 23-24. I already have EDs and this is making the back/shoulder pain worse. Could it be the diet (high salt, extra fluids) or adernline rushes from my H-pots that could cause this? Or is it a normal part of hitting the big 40?

I finally thought I found the right pajamas, tempature, pillow, position, tv show to be watching to fall alseep and the last weeks have been horrible. I had some of the 80's sitcoms on dvds I would watch as I feel asleep. After the episode was over the tv would stay on a fixed screen and there was no sound. One night my husband got up and shut the tv off. The flash of the tv going off and the room becoming dark sent the aderline rushing? My eyes went weird, the light on my phone and computer charging were unbearably bright. I was shaking, high pulse and it took me 3 hours to get back to sleep. I realized for some reason my eyes can't handle a dark room that has any flashing light. Since then I have had a hard time getting to sleep and staying alseep. It is like Im not sleeping deeply. My daughter got a drink at 4am and I normally would never hear this but it jolted me out of bed again taking hours to get me back to sleep. When I do get back to sleep I wake up feeling horrible. Not a fast heart rate, but I usually have 2-3 totally numb limbs, headache, problems adjusting to tempature, nausea, and alot of morning dizzyness. My ears are ringing so loud when I wake up, there is no way I feel like I can fall back alseep even if I wanted to. Before this started my morning were ok as long as I drank alot of fluids before getting out of bed, & starting my day at my slow pace. Now it takes several hours just to wake my body up.

Even after I get up I feel like my circulation is horrible all day. My balance is worse, ears constantly ringing, neck painand headache almost daily and I feel liking I'm quickly sliding back in progress and want to get a handle my sleep issues. My only current infection is my chronic sinus issues. Im also not sure if the lack of sleep is causing a vicous cycle of problems? I also know the fact that most of my family has died before or in their 40's due to anerysms is in the back of my mind but I have known that all my life & have been able to handle it. I have very limted access to medical care locally, just a primary care dr that takes care of my urgent issues and a few specialists that blame each other but do not want to tackle EDS/POTS or anything non strightforward. I am suppose to see a new primary care dr that just came to town in march but I can't go sleepless till then.

[Batik]

What meds are/were you on? Cimetidine can cause those breast problems.

[Katybug]

Florinef made me gain a cup size that didn't go away after coming off the Med. Do you have access to anyone who does sleep studies? Often they can do this in local hospitals. I also have a very difficult time of I don't sleep enough. I actually have daytime hypersomnia but that and all my POTS are seriously intensified by not getting 9-10 hours of sleep at night (once I fall asleep which is another hassle in and of itself.)

[sisblostg]

I tried a sleep study a few years ago and I did not sleep at all. They wanted me there from 8pm till 7am. I usually fall alseep on a very good night around 1am, but on a bad night not till 4 or 5am. There was no way I could sleep. There is only place to get a study locally and the dr said he would not try again.

I did take Florceinef twice in my life but not more then a week before I said this isn't worth it. The last time I tried it was over 6 months ago. Most of my managment is non prescriptions. I manage with careful fluid, salt and diet (lot of GI stuff). I only take klonopin .5 and clondine .1 as needed and I have taken those as needed for 15+ years. I take a half a lortab a few times a month if my eds pain is bad but it has to be rolling on the floor bad. The only antibodic I can tolerate these days is amoxicillin and I did take that in early january for the sinuses but it did not work. All the antibodics above amoxcillin I have not been able to tolerate (some like keflex, agumentin I took for years just fine but the last 2 years I have horrible side effetcs). I have taken a few advil, vitiam D, and use a neti pot. I had one filing redone, by a wonderful dentist who does not use novicane(understands POTS) and I felt fine after.

[brethor9]

I have had major increase in my breast size also from the florinef and it was also causing pre-Cushings symptoms in me.....I have been on it for over 2 years so my internist decided it was time to titrate down the dose (I am already on a very small dose) he said it is a steroid regardless of the type and over a long period of usage in some people it can start causing these issues. Since I have downed the dose my breasts have started to go down and I have lost at least 10 pounds of the weight; the only downfall is a lot of my POTS symptoms are intensifying ....... as for your sleep issues....sounds like a mirror image of mine in the beginning....since starting my mast cell meds it has gotten a bit better.......

Bren

[sisblostg]

I have had major increase in my breast size also from the florinef and it was also causing pre-Cushings symptoms in me.....I have been on it for over 2 years so my internist decided it was time to titrate down the dose (I am already on a very small dose) he said it is a steroid regardless of the type and over a long period of usage in some people it can start causing these issues. Since I have downed the dose my breasts have started to go down and I have lost at least 10 pounds of the weight; the only downfall is a lot of my POTS symptoms are intensifying ....... as for your sleep issues....sounds like a mirror image of mine in the beginning....since starting my mast cell meds it has gotten a bit better.......

Bren

I have been wondering again about mast cell activation but during my first visit to the mayo they seemed to rule it out via a 24 hour urine test, if this sounds correct? My whole life I have gotten very sick over certain smells. I can't get near candles, smoke, air freshners or perfume. Lately certain meds and foods have caused me to shake, sweat and look like I have the flu. I have a bad reaction to anything steriod, and now alot of antibodics. Someone thought it would be nice to give me some of that bath and body works armoatherpy sleep smell lotion a few weeks ago. You would have thought they pulled out a gun as I tried and stop them from opening the bottle and putting some on my hand. The smell, I felt like I could taste it gave me an instant headache, eyes watered, and stomach was sick. Living in the desert I have to have some pest control and I have hysertically fired more pest control companies then I want to admit. They promise me the spray won't smell or bother me but it always does. I just have been reworking my diet and Im always careful about any situation that could have the trigger smells.

[Angela]

i have done two 24 hr urine tests which showed nothing, i think they were trying to rule out pheo tho and also a tryptase (sp?) blood draw I cant remember right now what that was for. My neuro told me that mcad is super hard to catch thru tests so we didn't pursue, I just started h1's and h2's on my own and found it helped a lot of my symptoms. I don't really have flushing symptoms, although heavy perfumes girls at my office wear started bothering me this year and other than my clavical/upper chest/kneck has remained pink in color for over a year now, I don't really have any other indications of mcad but if I miss a dose of my h1 and h2's i feel worse, more tinnitus and tingling in extremeties...even tachy/adrenal surges are worse.

LOL, I wish my chest grew, still a b:)

[brethor9]

lol Angela! you can have some of mine!! They are driving me nuts

When I went to see the MCAD specialist he said also that the testing is quite inconclusive because the syndrome is complicated so he said he depends more on clinical history and symptomology and if the patient responds well to treatment. Methylhistamine urine is very hard to catch like Angela said and elevated tryptase is used more as an indicator for mastocytosis. You can have normal test results and still have MCAD. Some of your symptoms sound like mine....I have flushing, and bad chemical sensitivity and do not react well to alot of medications also (that's common just with Potsies) most of the meds for MCAD (H1 and H2's) are over the counter so you could always trial some if you wanted to and see if you have a positive response. In the 5 years I have been dealing with this illness I only finally started to get some relief after starting the MCAD meds so if you are having mast cell issues you should experience a positive response.

Bren

[MomtoGiuliana]

Sorry you are having such a dificult time. I just wanted to comment on the sleep issue. I realize you may be in a pattern of being accustomed to the TV before sleep, however, this may be disruptive to rest. Have you read about or has any dr talked to you about sleep hygeine? This might be useful so I am mentioning and including a link:

http://www.sleepfoundation.org/article/ask-the-expert/sleep-hygiene

[Batik]

On the subject of sleep, it sounds like you have Delayed Sleep Phase Syndrome. Look up darkness therapy, I've found that to be an excellent treatment for it.