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Deana
07-29-2005, 09:22 PM
Hi guys!
I am brand new to this forum, although I have been lurking for a while... :oops: I am waiting to get into see a rheumatologist. I have an appointment in about 3 weeks. My neurologist is sending me. I have trigeminal neuralgia that was being treated by my neuro, but I have begun to have all these other weird symptoms. I am SO tired I honestly feel that I cannot move most of the time...literally!!! My hair was falling out in HANDFULS...although that is better now...unfortunately it is all coming back in gray!!!!!... :lol: I have a really yucky pain in the right side of my abdomen...where my gallbaldder would be if I had one...and in the right lower quadrant of my abdomen as well. I was positive for RF and had an elevated SED rate and CRP...I do not know about the ANA...the nurse could not find my lab work that day!!! I am having swelling in my right ankle and some in my face. My BP just jumps around...somedays really good...114/72 other days 180/110. But my main complaint is headaches. I have put up with migraines for 7 years and trigeminal neuralgia for the last 2...and they are HORRIFIC, but this is an almost constant headache somewhere in my head. Sometimes on the right side, sometimes all over and the sometimes I will have this almost blinding pain in my right temple. It does not last long...maybe 30 seconds or so...but it will almost bring me to my knees. I know I have not been dx'd with Lupus yet...and maybe that is not what I have....but do any of these things sound familiar? Especially the headache part? I know that SLE effects everyone different and no 2 people will have the same symptoms, but what is it about Lupus that could cause you to have a headache. Thanks in advance for the help. I have a feeling we may get to know each other really well... :)

hatlady
07-30-2005, 05:11 AM
Hi Deana,

(I think we ALL lurk before we post.... :oops: wouldn't it be nice if we were all confident enough to just launch in? It is so much nicer to have a board full of people exchanging ideas and experiences!)

I haven't had dreadful headaches, but have had migraines on 1/2 my head at a time. I call them "Hemi-headaches" because I can truly feel 1/2 my brain - each crevase and fold HURTS - when they happen! The other type headache I get is related to TMJ - it feels like a band around my head being tightened until the top of my head is ready to POP. I wear a night bite guard, that has almost eliminated those.

I know headaches are common with lupus. Why? I don't know. Maybe Saysusie will have some informaiton for us.

Be sure to write down all your symptoms and as much correlated information as you can for your doc, to give him/her a hand in the diagnosis process.

Hugs, and welcome to the board!

Deana
07-30-2005, 09:43 AM
Thank you for your welcome!!! I have not been officially DX'd with Lupus and as I said...my Dr. (If I ever get in to see him) may have another DX all together, but it sure would explain a lot of things. The nurse at my Neuro's office just came right out and said "well, I just wanted to let you know that you are positive for RF. I didn't want you to get to the rheumatologists office and have him ask you how long you had had RA and be surprised."! I asked her if there was anything else that would cause you to be + for RF and she said no!!! I have a feeling that she doesn't know much about it...maybe she should stick to neuro related questions...LOLOL I have a great Aunt that had RA, but other than that I don't know anyone else in my family that has it. I did not feel like that was a correct diagnosis, although, I have really started to have some trouble with my joints since that time, but it is not bilaterally. I read that it is usually on BOTH sides and not just one...does anyone know if this is true?

Anyway...I have had so many weird things wrong with me over the last year that I had almost gotten to where I was just afraid to say anything. I feel like the Dr's and even my family have begun to believe that I just want attention or something. So you get to where you just suffer in silence, becuase you know that no one wants to hear it and no one believes you anymore!!

These headaches and the right sided abd. pains and the swelling/pain in my right ankle are what is bothereing me the most right now. As I said..the headaches are almost constant...in some form or fashion. My migraines are not as frequent as they were...and the Trigeminal Neuralgia is better, although I still have occasionl severe right sided facial pain, but this all over headache, and the right temple pain are new! It seems like I wake up with it and go to bed with it. I work with it, I go to church with it...it is driving me CRAZY... :(

I know I am setting myself up for a fall...I am hoping the the rheumy that I am going to see will have some answers...but truthfully, no one else has...I don't know why I expect him to be any different...but you know...you always hope that someone will be able to help you... :cry: I sure hope so...I am really tired of this.

Anyway...I will keep you guys posted as to what he says...my appt is not until the 18th of August.

I read somewhere that it seems that some Dr.'s are hesitant to DX you with lupus because of insurance reasons. What does that mean? Why would it matter to the insurance what your DX is? I guess I am just dumb...but I thought if you had it, they would DX you with it??? Does anyone know about this?

Thanks guys,

hatlady
07-31-2005, 04:13 AM
Many hugs dear!

I don't have any other relatives with lupus - so it isn't necessarily something that runs in families. Just like everything else, sometime a condition just IS. No reason, no way to find out why, it just IS.

I was dx'd after I went to my doc's office saying "something is wrong" as I had pain all over - not always in the same place, like the flu that wouldn't end. Don't let them tell you it is all in your head - the only thing there is the headache! Lupus and other rheumatoid conditions can be devilshly complicted to dx.

The comments about insurance - I can no longer purchase long term care insurance, unless I want to spend double what another person my age would spend. If I were out of work, I'd be uninsurable for medical as well. Just like car insurance - if they think you're going to use it, you pay more or can't get it at all. I've become a much greater fan of universal insurance - though Canada's and Britain's doesn't work that well. What we've got now isn't working for everyone either!

Maybe you'll get some answers - if only "it is NOT x, it is NOT y, we're still trying to figure out if it is z, r, or s." when you go on the 18th. Until then, keep reading, keep learning. And keep adding to your written out list of questions for the doc!

Also keep posting. We're all in this together!

hippimom2
08-01-2005, 11:35 AM
Welcome Deana. I am new here too. Not too long ago I went through some similar things as you. I had lot of symptoms that slowly developed over time. Initially the only bloodwork that came back positive was my ANA. The first rheumy discounted it and wouldn't listen as I began to develop other lupus like symptoms, so I switched doctors. Since then I have had problems with liver, protien in urine, elevated sed rate and borderline RF as well as classic lupus symptoms (sun sensitivity, mouth sores, swollen painful joints, and fatigue). My rheumy is treating me for lupus but has not written the official diagnosis because of insurance reasons.

I hope you have a realy good doctor who will listen to you. I have found that there are some who do not want to believe that people are sick. My advice is to make sure you are happy with your docor and if you are not, keep searching until you find one you like. I have also heard that some people who have lupus also have RA.

Take care and keep us posted on your symptoms and your Dr. appointment.

Deana
08-01-2005, 05:09 PM
Thanks, Hippimom!
Can you tell me why your Dr. won't write the DX as lupus for insurance reasons? That kind of confuses me? I just always thought if you had it, it was automatically listed. What are the advantages to not having it listed?
Thanks,

Mitch
08-01-2005, 06:29 PM
Hi Deana, Your post hit a nerve with me today (since I spent the entire day on the couch battling a headache - again!). The only experience I have w/ Trigeminal neuralgia is that my dad has it. He, as you decribed, would get sudden, very sharp pains in his face that would practically make him fall over! His tended to be sort of between the temple and cheekbone area. It seems to wax and wane. Sometimes, it is extremely troubling to him, other times almost completely goes away for very long periods of time. As far as the headaches go...I guess, on average I get about 2 really bad ones a month. They used to be more frequent, but since I suffer from a lot of sinus trouble, I now take preventative measures every day (just like sudafed) and it has decreased a lot. Now I won't get a headache just about every day like I used to. I can say that, since I was dx'd in 2002, my headaches are definitely different. I get a nasty pain that lies at the base of my skull and around my eye and up my nose (I know that's wierd!) Sometimes, I'm convinced they are sinus-related, other times they're definitley hormonal (usually the day before my period), but whatever the cause - a royal pain! I guess, maybe by process of elimination and keeping records of what you eat, do, the weather, etc...maybe a pattern will come up and it will then be easier to figure out the cause. Good luck - I certainly "feel your pain!"

Deana
08-01-2005, 08:06 PM
Mitch,
I am sorry about your headache today. I have had migraines for 7 years and TN for 2 and I know what they feel like. My TN is always to the right side of my nose and above my eyebrow. It is not like the ones that most people have where it affects talking or eating...it is a different branch of the trigeminal nerve that mine is affected by. But TN and usually migraines will always be one sided...for me it is the right. And as I said...I have those too, but I also have another headache now that is on both sides and hurts most of the time...the only time I do not have it is when I am asleep. It is not excrutiating...like the others, it is just there and wears you out throughout the day. I was just wondering if anyone else has this kind of headache and if so...what is causing it. It does not seem to be helped by Tylenol or painkillers...it is just always there... :( But I have good news!!! My rheumy called and has an opeining for tomorrow!!!! :D I am so excited....MAYBE...I will be on my way to finding out what is wrong. Say a prayer for me!!!

biker chic
11-07-2005, 03:18 PM
Actually to be truthfull, my mom came to vist me this past summer and told I had been diagnosed 20 years ago with Lupsus but she didn't tell me. :oops: I knew I had RA and have had my hip replaced. She said she didn't want to worry me! She is getting up there in years, I guess she wanted to get it off her chest. I let my doctor know, he referred me to a rhemetologist and the tests came back positive and I'm taking plaqinil. Over the years doctors having been treating my symtoms individually, such as rashes, migrains and fatigue. My husbands upset with my mom as well as all the doctors for not connecting the dots! I know very little about Lupus any support would be greatly appreciated! :)

Colleens
11-07-2005, 05:15 PM
Hello there,
Yes, i have headaches too. my gp wants to put me on Topomax to prevent them...they are of the migraine variety, back of my head style, with vision changes and light sensitivity, nausea. The stabbing one you describe sounds like the h/a I sometimes get too...who knows why some stab and some don't. I don't know. Sorry u are feeling bad.

Colleen S.

Jodi
11-07-2005, 05:43 PM
Hmm ... I don't know much about headaches. or how they are or are not related to lupus. I don't get migraines, or long-lasting headaches. What my headaches lack in duration, they make up in intensity though! I do get very short (few seconds) headaches that stop me dead in my tracks! I don't get them all the time, and I never can tell when one is going to come - but holy! When I get one, it is like an electric current went through my brain, or I was stabbed. I can't move, I can't talk, I can't even think for those seconds. I just pause. No idea what causes it - it's blinding though. Maybe everyone gets them. I don't know. Do you think it could be related to SLE? ...or it is just a random occurence? I see my rheumatologist again at the end of December. I will write it down so I remember to ask him. I had it on my mind when I went in two weeks ago, but sometimes my brain is cloudy and I forget what I want to say! Ah the joy of lupus:)

mommymc
11-07-2005, 10:11 PM
biker chic:
I am from Canada as well, I don't know what province you are in but try going on www.lupuscanada.org.
Their toll free number is 1.800.661.1468

I hope this is a help for you.
Keep us posted. I am in your corner rooting for you.
Mommymc
:angel:

biker chic
11-08-2005, 12:50 PM
I'm from Ontario, I've been to the website you suggested, but I find the info so overwelming as well as the disease. Anyways thanks for the support!

Ruthie

chal23
12-11-2005, 08:22 PM
Hi Deana,

Im new to this forum as well - and very sorry to hear about your Trigeminal N!! Your experience sounds just like mine - I began having cluster headaches in 2003 (which, I KNOW what kind of pain TN causes!) and was only recently diagnosed with Lupus. Do I think the two are related? You bet. So does my rheumy..
Get yourself checked out good - and be sure you chronicle your episodes of TN for the Rheumy..

Best,
Chal

val
12-12-2005, 02:49 AM
Hi,
I get dreadful headaches--I also have antiphospholipid syndrome(sticky blood) I also am having bad balance problems too. I also suffer with temporal mandibular joint dysfunction, common in fibromyalgia ( I have that as well as lupus)
Life without a headache must be lovely--I cannot remember when.!!
If you are going to see a new Rheumie, make sure you write a comprehensive symptoms list. Good luck.
Val

catlady4520
12-14-2005, 04:07 PM
I completely understand the headaches! I have CNS vasculitis and thought my headaches were under control - my neuro has changed meds/dosages several times - very frustrating! Keep in touch with your dr and keep a log, that will help pinpoint what causes the flares and the severity. Good luck!

BrzlianBanana25
12-14-2005, 07:50 PM
I have tons of headaches all the time. I've suffered from migranes since I was 15... The bad kind, with light sensitivity, nausea, sound sensitivity, etc... But in the past couple of years I've had this horrible headache. I get these stabbing-like sensations, sometimes on just one side by ears or by my eyes, or sometimes the back of my head. They are horrible... I've tried so many different meds, and nothing seems to work. Sometimes the pain is so violent it makes me nauseated.