Increasing Migraine

First time poster here. I'm experiencing what seems to be unique migraines. I'm a professional, successful 35 yr old single male that used to enjoy lots of socializing, dating, my job, and had an extremely positive outlook on life. I had never had any headaches or health problems. I felt like I was on top of the world. That all began to change 13 months ago.

My story: I was travelling in Thailand in January (13 mo.s ago) when I got sick- the result being that I was placed in a clinic on an antibiotic for 3 days and diagnosed with Tonsillitis. After the clinic I continued to travel in Asia for 3 weeks, but was feeling very run down with a slight headache and general chronic fatigue.

When I arrived back in the States in February I went to an ENT. For months I continued to go to various doctors, cat scan, MRI, hormone panel, blood tests, the works. Headaches were coming and going, but typically not severe. I had chronic fatigue and bacterial infections that never seemed to go away. I basically felt like I was constantly running a low grade fever (although I wasn't). Ten different antibiotic prescriptions which means I was on them for about half of the entire year. Finally in November (4 mo.s ago) I had a Tonsillectomy after numerous doctors telling me that was the cause.

No change in symptoms and in December the headaches got bad, bad in the sense that they were around 24/7 and unlike any headaches I've ever heard of. They've continued to maintain their persistance and seem to constantly evolve into something worse than before. Even my neurologist is puzzled as I don't have sensitity to light, noise, no vision issues, and nobody in my family has had migraines. My medical bills last year totaled $14k.

My symptoms now- I'm off the antibiotics and taking vitamin supplements- so far no more bacterial infections. As for the headaches, jeez not even sure how to explain. Severe pressure as if my skull is about to pop open. Sometimes the source is the front of my head, sometimes the back, sometimes the middle. Often my temples. The best way I can describe the feeling is it feels as if a large hand is over my brain and digs fingers into different parts of it. Sometimes the hand just squeezes the entire front of my brain really hard, sometimes the back. On better days the imaginary hand just sqeezes lightly. Sometimes my face is flush and has a warm sensation.

I'm constantly experiencing new symptoms- this week the pain is now going into my jaw, my ears feel as if they need to pop but they don't, and I'm getting tingling sensations on the left side of my face. I was prescribed to Lyrica 8 days ago so not sure of if that's the cause of this week's particular symptoms. I have absolutely no sex drive..maybe just because of the pain, maybe the Lyrica, I don't know. Not sure I really care at this point.

My life now: When I'm not working I'm hanging out at home trying to manage the pain. My friends (except those close to me) no longer call because I'm never available to hang out. I don't talk about this with other people because I don't want to burden others with nagativity. I'm prepared now that I may not get better, but I also refuse to continue living this way for too many years to come.

Wow, feels strange telling my story. If anybody has a similar one, or any advice, I'd love to hear.

Cheers and thanks for taking the time to read.

benji, i wrote a lengthy response yesterday, and then made it all disappear. blame it on age (72) and killer head pain, i guess. so here's a shorter note, and i do hope some others will be able to give you more ideas for where you can go from here....

i do not have a similar story. it really seems obvious that you picked up some horrid bacteria or virus in thailand. the first thing coming to my mind is lyme disease. it can cause very bizarre symptoms. (i probably have had this for 43 years, but it can be extremely tricky to diagnose. i've had my share of pain, but have also managed to have a life, which is what YOU want, too, after all. there is always hope).

methinks you should go to an epidimiologist. another neuro might be a good idea also, but i think you need more experts on your team, if at all possible, insurance/money-wise.

good fortune to you in your search for answers. personally, i have had four surgeries which were supposed to cure me, and failed to help. therefore, no more surgery for me! if you feel like sending me a private message, that would be fine, too. i surely sympathize, and could perhaps share some of what i've learned over many years. dianne

what pain relief are you on, how much and how often?

dcook- Good suggestion on investigating possible causes from Thailand. I'm going to talk to a doctor about this.

Dawn, I started Lyrica on 2/2 (10 days ago) and also prescribed to Lortab when the pain becomes intolerable. My neuro put me on a 6 day titration with the end dose being 3 100mg pills a day. Not sure if the titration was too quick but it made me too loopy to work so I'm currently taking 100mg in the morning and 100 mg at bedtime. I'm not sure if this is an acceptable dose- I left two voice mails for my neuro on wed and thurs this past week inquiring about the side effects and dosage but haven't heard back.

Just really not sure where to go at this point as far as a diagnosis. Rather than taking a look at my variety of different symptoms, the doctors seem to just diagnose within their specialty (i.e. Immunologist diagnoses allergies, I've taken allergy tests and have no allergies; ENT diagnosis Tonsillitis, and after performing a Tonsillectomy he diagnosis Sinusitis; the Neuro diagnosis migraine, although he admits my headaches and associated symptoms are atypical of a migraine sufferer).

Again thanks for taking the time to read this. I haven't in the past talked about this with many others but rather tend to sit at home with pain and a lot of anxiety over not knowing what's going on. This forum has really been helpful.

Benji1976, have you seen this web site:
http://www.mdjunction.com/ndph/articles/new-daily-persistent-headache-in-children-and-adults

It may relate to your chronic headache.

Martin

its so hard when you seem to go round in circles to find an answer, def look into this thailand thing.

if youre on face book click like on migraine action and national migraine centre and they have loads of info, also you can write on their wall and a neuro to answer.

keep on delving and reaching out for support.

Hi, the very first thing that sprung to mind as I read your post was Lymes disease. Its definataly worth asking to be tested for that. I don't have it but I've read about a lot of cases where people have been travelling and started to feel ill soon after with some mysterious symptoms, headache being one of them.

Hope you get some answers soon!

Jul

Thanks for all of the helpful suggestions. Only wish I had joined this forum sooner- really helps to get other people's thoughts as opposed to sitting around and just racking my brain.

The Lyme disease comments casued me to recall that during those specific travels I noticed some kind of bite on my back just below my left shoulder. At first I thought mosquito, but the itching was more mild and had a tingling sensation. Although it's been 13 months, I still get a tingling sensation from time to time in the same area. I've always dismissed it as a mild nerve issue, and it could very well be nothing. Regardless, the comments to my post have opened up some new doors in my thought process.

Benji - I imm'ly thought of Lyme's as well. I always had migraines, but only a few a year. Then I got Lymes (but here in the States) and my migraines went crazy. As my Lymes specialist said, the disease attacks a persons' weakest area. I was also on various antibiotics for 6-8 months, which could screw up the system. I have a good friend who also had Lymes and was on antibiotics for a long period of time and went to a special clinic (like a holistic clinic or something) and was tested and found out she was highly depleteted on SO MANY different vitamins, minerals, amino acids, etc b/c the body wasn't designed to be on antibiotics for so long and sucks certain things out of the body (not sure what, I went to law school, not medical school). Anyway, that helped her for awhile. Even if you don't have Lymes, you still were on the antibiotics for an extended period of time.

I sympathize with you buddy. I was you a couple of years ago. I lost most of my friends b/c...well, I don't know why but I assume it was b/c they thought I was blowing them off or they were sick of me being so negative or soemthing like that. (I was always the super positive, super fun, peppy friend who planned events and did things for people). I would recommend that you actually tell your friends what is going on so you don't loose them like I did. I know right now that everything is hard b/c you have no energy and are in constant pain, but maybe you can shoot them out an email. Not to be stereotypical, but it might be a little harder b/c your a guy (no offense here at all...I wear my emotions on my sleeve) but just a quick email letting them know that you are really sick and don't mean to be dissing them/ignoring them, but you can barely function right now and you are doing everything you can just to keep your head above the water and keep yourself from getting fired. Something like that...just a suggestion, I sure wish I would have done that b/c I lost a lot of what I thought were great friends.

Anyway, I hope you figure things out and keep demanding answers! You will not get any unless you are your own advocate! Best of luck!

I visited my neuro yesterday and he said that while my symptoms are unique, his best opinion would be chronic daily headache (due primarily to acute onset, lack of migraines in my immediate family, and no sensitivity to light or sound). He increased my dose of Lyrica, but also wrote a prescription for topamax in the event that the Lyrica continues to be ineffective.

I've seen a lot of posts on Topamax, so wanted to report that according to my Neuro 15 percent of people encounter side effects, often severe obviously. In addition, I requested to see an Infectious Disease Specialist- and plan on making an appt next week. My neuro recommended against my seeking any natural health remedies, and was resistant to lumping in sinusitis/ bacterial infections (which have been present since the onset of my headaches 13 months ago) as being relevant to my headache symptoms. He does seem intrigued by the unique attributes of my headaches- he mentioned he often sees 20 patients a day yet spent 90 minutes talking to me.

One thing that's puzzling is that most doctors I've seen are resistant to considering any symptoms that are outside of their specialty, while most rational people outside of the medical field naturally assume that if the onset was all at the same time- then it's probably all related. This isn't an insult on the medical field, but rather a curiosity. While healthcare sometimes has the greatest impact on our quality of lives, I've observed that it often has a distinct quality of narrow mindedness not shared by most other lucrative professions.

Good to hear you are making some progress at least.. and hopefully your visit to the infectious disease specialist can give you further insight to a possible cause for all of your problems.

Wishing pain free days your way and welcome to the forum.

benji, it's good to see your picture! glad you are making some progress in seeing specialists, and hope you get someone who can think of zebras, not horses, in your unique case.

you hit the nail right on the head with your comment re: doctors being unwilling to consider other possibilities than that which they have been taught. this has been a vastly discouraging scenario in my life, through 43 years of trying to find answers. any answers found have been because of my own research, not because of medical creativity, i have to say.

as for your sinus/bacterial infections, this is just plain narrow-minded. OF COURSE they are connected.....they are all in your head, right? i'm sorry, but cookbook medicine is just not what we need. and a person can certainly have several disorders going on at the same time. any rational person can understand that.

best of luck with your experts helping you improve! dianne