Boyfriend Has Strange, Yet Familiar Symptoms (long)

[delphicdragon]

Hey Everyone-

Not sure where this should go, but, here's the story. (And yes, I know no one here is a doctor (except doctorguest), but considering all our medical problems, I think we should all have honorary medical degrees)

I've been dating a sweetie for about 6 months. He "gets" how I'm feeling and has been more than receptive in understanding my limitations (perhaps knowing me for 6 years might be part of it) Anyway, he had major oral surgery in January (wisdom teeth out AND a bone graft) and ever since then he gets really dizzy standing up. I've checked his heart rate on these occasions and there is no change that I can feel, but if he starts to walk, he falls over. This started happening right after the surgery and hasn't gone away. He went to the doctor, and explained about this as well as some disturbing digestive symptoms and she basically said, "oh, that's normal". Riiiight.

His digestive stuff sounds A LOT like gastroparesis, but I'm not sure. He's wicked thin (6'1 and 135), and has had issues for about two years. He says he gets full really quickly and then it feels like there is a ball in his stomach that doesn't go away. (Kinda gross, but I asked if vomiting relieves it - he said yes, but if he relied on this he'd be doing it every day ) This fullness happens even with drinking water! He then gets severe stomach and chest pain (generally right sided), so bad that he can't move, which seems to resolve in about an hour. (Scared the **** out of me the first time that happened ). He winds up really pale when these events occur. Heart rate seems normal - albeit slowish during these instances. His stomach seems always upset and as he puts it "nothing stays in him" and he describes having to trick his body into eating by downing a Slim-Fast or Boost or something before his stomach can figure out what he has done. He mentioned this to the doctor and she said that "it's acid reflux." Going on that premise, I have treated these episodes with Tums and Papaya (natural enzyme good for indigestion). Neither caused a reduction in the intensity or length of these episodes even after multiple attempts.

The doctor tried him on Prilosec, which caused arguably one of the most severe allergic reactions I have ever seen short of anaphylaxis. Severe hives, bruising, insufferable itching, and cold chills for almost two days ON Benadryl. Now she wants to try him on Pepcid for a month to see what happens. I know it's not the same thing, but he's panicked about taking it and I don't blame him. There's also the worry that if it doesn't work, she's going to just keep him on it indefinitely and not search for some solution. She did run some blood work for H. Pylori (negative) and for lactose intolerance (negative).

One other weird thing is that I can write on him, and I don't mean with a pen. If I touch him I can draw on him (played tic tac toe on his stomach the other day (yes, I know I'm weird)). I read that this is called dermatographia and it tends to mean a high allergic potential. He also has severe migraines, triggered generally by sunlight. I look at him and think that he's only 20 and shouldn't be having these medical problems.

Do these symptoms sound familiar to anyone? The OI and stomach stuff are really bothering me, and him, but I'm not sure how much to push. He's dealing with it okay, but the stomach issues are really affecting his life (I never thought that I would be eating MORE than he does). Any ideas as to what I can do or what this might be? I thought of Mast Cell Activation Disorder or some other weird thing to try to explain it all, but I'm not sure. It doesn't sound like POTS. Should I see if he can see his neurologist soon to discuss this?

Sara

PS- Thanks for letting me vent, and I apologize for the length.

[lloppyllama]

hmm....that is odd. You're right it does not sound like POTS, but maybe going to a different doctor in general would be of benefit, as the one he has isnt really doing the trick.

Good luck, hope it gets better soon!

[mcaimless]

Sounds like neurocardiogenic syncope (NCS). Look on this site for a good overview of it. Perhaps a tilt table test is in order...

[flop]

When you say he falls over when trying to walk do you mean that he can't balance and has a fall whilst awake or that he goes lightheaded and has a blackout? If it is the blackout sort of fall then he may be having problems with low blood pressure (postural hypotension). Sounds like he needs to see an understanding doctor that can run some tests for him. He may need to see a GI doc and Neurologist or a good PCP/family medicine doctor. I hope he feels a bit better soon.

Flop

[delphicdragon]

When you say he falls over when trying to walk do you mean that he can't balance and has a fall whilst awake or that he goes lightheaded and has a blackout?

Flop

Thanks for your insight Flop. He can't balance. I know after the wisdom teeth thing he did pass out (thankfully his dad caught him) and he describes these instances as similar to that. I'm not really sure, but I'm going to ask him as soon as I see him (Finals week for both of us, so we're a bit swamped.)

Sara

[flop]

Hi Sara,

after his exams are over it would be worth him trying to decribe the feelings he gets before falling. If he is having faints or pre-faints he may get a combination of nausea, feeling hot, sweating, feeling shaky, palpitations, hearing becoming muffled, vision changes eg colour changes or his fields of vision closing in. A different possibility could be vertigo which would be more likely to give a sensation of the room spinning or the floor moving (a bit like being on a boat on rough water).

I hope he gets some answers and has time to concentrate on his health after finals!

Good luck to you both in your exams,

Flop

[juliegee]

Hi Sara-

Poor fellow. Sounds like you have good reason to be worried! I'm checking into mast cell activation myself and it sounds like your BF should too. Unfortunately, there aren't too many docs who know very much about it. Check out this Mastocytosis site: tmsforacure.org to compare his symptoms and possibly find a knowledgeable physician.

I had a bad reaction to Nexium, chemically similiar to prilosec. I'm certainly no doctor, but will recommend some OTC things that may be helpful. (Be sure to check with a real physician before trying!) Try some OTC ranitidine for your BF. It is an antacid and antihistamine, an H-1 or H-2 blocker (can't remember which.) Huge amounts of acid are prevalent with mast cell disorders and respond well to ranitidine. Also, OTC zyrtec taken daily may also really help. I went through a period of about 6 months where I had a very hard time eating. Once I began antihistamine therapy, zyrtec in the AM, benadryl at night I was able to eat much better.

I was lucky to find an allergist, formerly from Mayo, in my hometown. He's sending me to Brigham and Women's this summer to figure this mast cell thing out. Tell us where you live & I might be able to recommend a doc in your local area.

Good luck with exams.

Julie

[delphicdragon]

Julie-

We're in CT. Are you talking about Brigham's and Women's in BOSTON?? That's about 2 hours from me.

Once his exams are over, the plan is to try the ranitidine (Zantac) for a few weeks and see if that helps. I'm certainly hoping it does. My worry is that the dr will say "see it's indigestion" and not look any further.

Sara

[juliegee]

Hey Sara,

Funny, I thought you were in the northeast (I used to live in Maine!) when you said he was "WICKED" thin. Yep, I'm talking about that Brigham and Women's. One of the best mastocytosis/mast cell activation disorder docs in the world is there. Her name is Dr. Mariana Castells. Let me know if you want contact info or google the hospital and check out the physician directory. I'm going to see her this July.

I feel certain that the ranitidine will help with the acid. I take 150mg AM and 150mg PM. It's the combo of antihistamines that will probably most help your BP. Ranitidine & zyrtec in the AM, and benadryl in the PM whould offer a world of relief. All OTC, but check with a doc before trying anything new. The combination of the H-1 and H-2 blockers really helps.

All the best-

Julie

[juliegee]

Oops, Sara. I meant to say the drug combo will help your BF, not your BP. That's what happens when I type in the dark! But, he's probably smart to wait till exams are over to try.

Julie

Hey Sara,

Funny, I thought you were in the northeast (I used to live in Maine!) when you said he was "WICKED" thin. Yep, I'm talking about that Brigham and Women's. One of the best mastocytosis/mast cell activation disorder docs in the world is there. Her name is Dr. Mariana Castells. Let me know if you want contact info or google the hospital and check out the physician directory. I'm going to see her this July.

I feel certain that the ranitidine will help with the acid. I take 150mg AM and 150mg PM. It's the combo of antihistamines that will probably most help your BP. Ranitidine & zyrtec in the AM, and benadryl in the PM whould offer a world of relief. All OTC, but check with a doc before trying anything new. The combination of the H-1 and H-2 blockers really helps.

All the best-

Julie