If anyone can relate to these experiences and can give insight I am very thankful.
Currently I have a headache for approx. a week.
-started in the left temple area....and travels across (as I type it is from temple to temple and the glare from the laptop is very uncomfortable. And there is the occasional blunt pain in behind my left eye. Pressure and applying cold helps. And of course at this point I am truly physically exhausted.
Headache History:
- 2 yrs ago the relentless headaches started. (never had a headache before). At this time I was physically leaning to the left and falling to the left. One morning I woke up (had been having the headaches for days) and when I sat up my right eye (vision) would drop from looking straight to the 5 o'clock position...correct to straight and drop again....this happened a few times and I had someone drive me to the ER. Tests, MRI ---> inconclusive but not a stroke.
- continued nausea, visual trailing (like when you are in a car and think it is rolling back???) When driving stopping at a red light and not being sure where I am. (I reduced driving by 90% and stay local....miss being a free soul and adventuring) My daughter said she was afraid I was going to forget her name...and that I wasn't driving right.
- few months ago went to ER. I was wiping the kitchen counter and everything visually shifted 45 degrees to the right. This happened a few times and an aura. Tests OK, no stoke, vision in right eye really bad...but the ER was considering admitting me, Follow up with Neurologist (who I will call tomorrow), more test but so far nothing showing.
-Now the present. Headache started last week. Slept 14 hours last Sunday into Monday....Wow!!! And it just took me almost an hour to type this...thank you for the spell check....
When I mentioned this to the rheumy she said it is not Sjogren. But, I did read a study that DID mention a connection. Have to stop now as the headache is near a 9 rating,my entire forehead from temple to temple feels like it is being crushed and I actually feel like crying. I am going to take Advil, and apply cold.
FYI: We have not yet had the heat on (I am always hot, others can touch me and feel heat and I feel better in temps of under 65 degrees) and since this has happened in all 4 seasons...???
As I wrote when I started any input is appreciated. And if this helps someone reading this...that is a good thing. I will check back latter...wishing all the best.
I'm sorry I do not have any answers but I have had the same headache as you have just described for 5 days. :'(
I hope you get some relief. No pill has helped mine.
I have no headache history.
Good luck, Carie
I once had a 7 day migraine. Nothing other than that.
Hope the neurologist can help you.
So sorry you are dealing with this. Migraines were one of my first and very worst symptoms. I too had them for days on end. You are correct that migraines are associated with Sjogrens. Here is some info on this.
http://ard.bmj.com/content/48/4/312.abstract
The culprit is high levels of an amino acid called homocysteine. If you check my past posts, I have posted a great deal of information on this. Homocysteine destroys the endothelial cells. These are the cells that line your entire circulatory system. Studies show it is directly linked to Raynauds, MS, Scleroderma, Migraines, diabetic neuropathy, vision problems, RA, hypothyroidism and heart disease. It also interferes with the metabolism of magnesium. I can post studies if you would like to see the direct connection to any of these diseases and homocysteine. It is important to resolve this. For instance, a study published in the Journal of Internal Medicine found the risk of having a heart attack is 60% higher just a year after a patient is diagnosed with RA. The following abstract shows the relationship between patients with rheumatoid arthritis and increased levels of homocysteine. This leads to increased mortality related to cardiovascular disease. It is titled: "Abnormal Homocysteine Metabolism in Rheumatoid Arthritis." If you view my past posts, you can see why homocysteine is elevated and what you can do about it.
Engy... I am sorry you are in the same or similar place.
I took 3 (three)Advil and am the headache has lessened. And I feel soooo dry I am drinking a lot of water. Physically I am so weak in my legs and arms and shaky ; I just went to open a box and do not have the strength to do it....so I figured I would sit and check the post. I put some music on thinking it would help....but, it is like I can feel the sound waves in my brain and the glare from the laptop is still quite bothersome. It feels like all my brain neurons are in hyper mode...even the humming of the refrigerator is annoying ... There is a constant high pitch sound...like I can hear the electricity in the house.
Re: Taking 3 Advil. I had a miscarriage years ago (a few decades...time flies....whoa) And after the procedure I was having pain. The Dr. told me to take 3 Advil; as that dose is at a prescription level.
Ok...wow this takes forever to type and the Advil has REALLY helped.
I will copy what I have written in this post and take it to the Dr. I hope he will see me quickly. I was determined Disabled and medical insurance will pay for a driver to take me to appt.
Nat thank you. I have read some of your posts before and I thank you.
I would appreciate if you could provide links here ....as it is difficult to search at the moment.
I still haven't figured out how to post more than one link at a time. I am so glad you are feeling better though. Here is a study on Raynauds and homocysteine.
http://www.yourhealthbase.com/database/a97c.htm
Here is one on arthritis.
http://www.ncbi.nlm.nih.gov/pubmed/9125255
One on Scleroderma.
http://www.jrheum.com/abstracts/abstracts03/298.html
Diabetes
http://www.ncbi.nlm.nih.gov/pubmed/11318838
Multiple Sclerosis and Depression
http://www.annals-general-psychiatry.com/content/7/1/17
I did a search on homocysteine and copied and pasted all I found.
https://sjogrensworld.org/index.php?action=search2
Here is another one on MS that states, "Thus, we found a significant relationship between MS and vitamin B12 deficiency..." Low B12 leads to high homocysteine.
http://www.ncbi.nlm.nih.gov/pubmed/19153046
Thanks Nara. Here is one on hyopthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/10646653
Quietdynamics,
I think following up with your neuro is the smart move and I hope when you call tomorrow they will get you in soon. Migraines can be associated with many things, so you need to have it properly checked and not just assume it to be homocysteine or even Sjogren's.
If you search you can find articles saying that cheese or hot dogs cause migraines. I'm not saying to believe this. My point is that you can find an article saying just about anything. So it's best to just see the neuro and have it checked. They will hopefully find the correct cause and treat it accordingly.
Please keep us posted. Hoping you feel better.
Thank YOU....you are both terrific for posting those in one spot.
Yeah the laptop glare has subsided.
Last visit to Rheumy, Dr. indicated the start of thyroid antibodies...."we'll have to watch that...see ya' in 6 months"
Had a colonoscopy after not being able to control "myself"...and now have medication for that. Dicyclomine 20mg.
I moved to an area with more medical access and am getting references to new Dr., some are at the Princeton Medical Center. A wonderful place. Hope they take my insurance.
For 4 yrs now summers have consistently been physical disasters. With the cooler temps I was so happy to be able to do things, so when this persistent headache happened I felt somewhat devastated. My goal was to start doing some of the lessons @ Khan Academy online (free)....strain my brain and learn something new and pump-up those little brain cells. Start Physical Therapy (a lot of muscle loss), have my 3yr. granddaughter visit. Start a walking program.
I was a very active woman, Loved doing summer equestrian program with young children, didn't even have TV for 10 yrs, a single parent with two active children, working with special ed kids and taking masters courses.....and it was like I crashed into a wall............splat!!! Now I need to figure out how to repay my student loan, for a degree I almost finished, and now never will. In hindsight, I see that the symptoms were sprouting years ago and mistreated, misdiagnosed. Sad. A reality many here have experienced.
Knowledge = Empowerment: so thank you for the links and I will start reading ( I also read footnotes and citations ;) )
Anita Thank you for the support. "not just assume it to be homocysteine or even Sjogren's. " Honestly, from experience I don't assume anything, even that Drs have been right.
I did have a positive for Lyme, about 6 yrs. ago and even though the lab said to have the Western Blot, the Dr. never mentioned it to me nor did he order the Western Blot. Someone else saw my labs and that I had not had the follow-up. The Western Blot eventually did show 3 bands out of the 5....so according to CDC, no treatment necessary.
I do believe this is all connected.
Good news the crushing pain is gone...so now I can eat.
Quote from: quietdynamics on November 20, 2011, 02:22:23 PM
Engy... I am sorry you are in the same or similar place.
I took 3 (three)Advil and am the headache has lessened. And I feel soooo dry I am drinking a lot of water. Physically I am so weak in my legs and arms and shaky ; I just went to open a box and do not have the strength to do it....so I figured I would sit and check the post. I put some music on thinking it would help....but, it is like I can feel the sound waves in my brain and the glare from the laptop is still quite bothersome. It feels like all my brain neurons are in hyper mode...even the humming of the refrigerator is annoying ... There is a constant high pitch sound...like I can hear the electricity in the house.
Re: Taking 3 Advil. I had a miscarriage years ago (a few decades...time flies....whoa) And after the procedure I was having pain. The Dr. told me to take 3 Advil; as that dose is at a prescription level.
Ok...wow this takes forever to type and the Advil has REALLY helped.
I will copy what I have written in this post and take it to the Dr. I hope he will see me quickly. I was determined Disabled and medical insurance will pay for a driver to take me to appt.
What immediately caught my attention is that you suffered a miscarriage, I am sorry to hear that however, have you been checked for antiphospholipid syndrome? It's a clotting disorder sometimes called "sticky blood"...........I do have Sjogren's and also APS.....a miscarriage is one of the main symptoms of this disorder. (not to scare you just have you aware of maybe something you should look into.........just takes a simple blood test) Right now I am on aspirin for it ....luckily I am asymtomatic and haven't thrown a blood clot anywhere............most people that have been diagnosed with a bloodclot are put on Coumadin.
Headaches and fatique also go with APS....
Diane, I had two miscarriages... both later 1st trimester. And I had spotting with my daughter and her pregnancy was monitored at the "High Risk" level. There was a hotline and I was told to go toSt. Lukes Hosp. Bethlehem, PA...wonderful care for anyone in that area.
Interestingly, I always had heavy bleeding, big clots during menses. And my brother had ITP, a blood clotting disorder,as a child. He was treated at Columbia Presbyterian Hosp. NYC. At that time he was one of only two children hospitalized with the disorder in the USA ( Early 60's and is in their research), after leukemia was ruled out. His treatment was experimental at that time. Most of a year hospitalized, transfusions, bone marrow and spinal taps. He was only 8yrs. old. He later "outgrew" it. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001562/
Maybe a genetic "kink"?
Really wish they had one of those scanners Dr. Bones used on Star Trek. Most of that shows' gadgets were based on military developments/inventions. So one day... :)
I agree with Diane that a check for APS (simple blood test) might be warranted with the miscarriages. I too have APS and have had several strokes and other clots (in eyes and legs). I never get migraines, but they can be associated with APS also. With your family history, a few extra blood tests might be a good idea. As I said before, there are "many" things that can be associated with migraines so let's hope your doctor does a thorough check.
I will request the test for APS.
Every time I see a Dr. they are handed a family history with a Header that reads "Retain in Medical Chart". All that has been mentioned here they are have as well, and I take my labs with me each visit and if they have one I do not have I get a copy....so hopefully everyone is on the same page or at least planet.
I have gotten "looks" because I had my daughters' ANA checked. She has a similar menses as I did. And some other symptoms that come and go, chest pains, racing heart rate. When she was in 8th grade she was hospitalized and diagnosed with hyperthyroid. Subsequent tests were normal and I was told "some things can't be explained". Her personality was bizarre and she could barely sit up she was so exhausted. She was left traumatized by her experience with Drs. who after her tests came back in the normal range...sent her to a psychiatrist who gave her scripts...while I am demanding that they are missing something.... sound familiar?? And my daughter has never been the same... once so full of exuberance.
( I had thyroid tests fluctuating hyper/hypo, then normal)
Again, we are living in an area with access to better medical care. Local to Princeton and Philadelphia.
I know it will take work and time, but I really hope for my daughter I can get answers. She has asked me if I am dying, Is she going to get what I have, and that she does not want to have children and put them through this. I think she quite perceptive. She is considering becoming a therapist ...so other kids do not have to feel the way the Drs. made her feel.
Her experience with the Drs. lasted almost 2 years. She asked me why this "bad" thing had happened. I told her I didn't know why, but I REALLY do believe that one day because of her experience... she would be in a position to help someone.
So here are folks experiencing "bad" things.....and you are helping someone. Blessings can be like butterflies...
I know that current medical opinion defines all of these symptoms as different disorders, but I think we can show that they are all directly connected to a common cause. I believe that these differently named diseases are symptoms of missing pancreatic enzymes called proteases. I have found that every autoimmune disease can be traced directly back to them. Here is one study that shows the connection APS has to these missing enzymes. APS is linked to elevated levels of tumor necrosis factor. I just recently posted a study that shows these enzymes are what degrade tumor necrosis factor. (you can check my past posts to see it or I could post it again)
http://www.ncbi.nlm.nih.gov/pubmed/20012959
Elevated tumor necrosis factor causes the heat, redness and swelling in RA. It is also responsible for the swelling of the parotid glands. It has long been implicated in the pathogenesis of MS. In MS, the magnitude of the elevation of TNF in cerebrospinal fluid mirrors the severity of the disease.(Finsen, 2002). APS often mimics MS. TNF is also directly linked to Crohn's, insulin resistance in diabetes and sets off an acute phase response. This can show up in your bloodwork as elevated CRP or C-Reactive Protein.
I will find some more connections to these missing enzymes and APS post the studies as well.
APS and lupus have a close association. Here is a lupus study that shows unbroken down bits of DNA and proteins in a lupus patients bloodstream because of a lack of the enzyme DNase 1 as is stated in the study. DNase 1 is a protease that originates in the pancreas. Its job is to break down dietary proteins and DNA. Lupus patients lack this enzyme. The immune system targets these abnormal proteins and DNA because they are not properly broken down.
http://www.sciencedaily.com/releases/2010/05/100503161423.htm
Here is a study that shows APS is also connected to elevated levels of homocysteine.
http://www.ncbi.nlm.nih.gov/pubmed/11914660
Elevated levels of homocysteine is also a risk factor for miscarriage. Deep Vein Thrombrosis is also associated with APS and elevated homocysteine.
Here is some info on miscarriage and homocysteine. If you scroll down, you will see the B12 connection.
https://sites.google.com/site/miscarriageresearch/homo
Nate,
One of the first oddities I experienced was during the first summer I felt unwell.
I invited a woman to go to the lake with the children and myself. I had on my bathing suit and she asked what is the bump on your neck? I looked in the mirror and lo' and behold a bump at the at the base of my neck .... no clue????
That summer I experienced overwhelming fatigue and it was the first time in my life (and the only time) I was chilled in the summer. It was the first time I did not go into the water all summer...and I loved being in the water and really loved playing with my children.
Eventually I went to the Dr. (the start of this journey) and he said it was a fat deposit. But doctor, I said, I am not fat. then 5'4 and a size 2 or 4 (depending on manufacturer...the ladies know what I mean). No my mother doesn't have it and I did not injure myself. It is not insignificant and I grew my hair to cover it and am most often seen with a scarf draped on my neck....but I would really rather be wearing something fun and sexy...lol....while I still get the urge. ;)
Nate..I mention this because the only research I found was Buffalo Hump as a result of protease inhibitors used for HIV. So I do find your research interesting.
"I know that current medical opinion defines all of these symptoms as different disorders,but I think we can show that they are all directly connected to a common cause" I agree. I understand about genetic predisposition....something triggers this. Research is looking more and more at bacteria (spirochete-like ones) even as the possible cause of bi-polar condition. By the way, the Rheumy is the head of the Dept. of Rheum @ Robert Woods Johnson (teaching Hospital) and one of her first questions was "Are you bi-polar?" She was disappointed when I said no. She explained she sees a significant number of patients who are both and is researching/publishing a paper on this. Hmmmm??? which came first the chick or the egg????
Hmmmm missing protease???? Buffalo Hump????
I posted some info on the connection to the inability to break down proteins and depression etc. under the thread "Any herbs or natural anti-depressents out there..." It is on the front page. I think the bacterial connection can also be clearly explained. Bacteria and viruses wrap themselves in a "protein shell" to disquise themselves from the immune system. It is the proteases job to remove this shell so that the immune system will then target them for destruction. A viral or bacterial infection would deplete your body of proteases because they would be needed to disarm the invaders. This is why a viral or bacterial infection often proceeds an autoimmune disease.
Very interesting connection you have made to the buffalo hump and proteases. Hmmm is right.
Yeah!!!....I will go to bed and have sweet dreams....'cause I gave Nate something to Hmmmmm???? about.
It will be interesting to read what you come up with....better go to bed. I have a lot of links to "start" reading tomorrow, after I call the Neurologist.
Night all.
Wishing you rest and a peaceful sleep.
I just posted this information on interstitial cystitis under the thread, "Big weight loss..." Many of the symptoms experienced by autoimmune sufferers that are thought to be caused by unknown factors can be explained. All of them actually. Interstitial cystitis is a good example. Homocysteine is 40 times more predictive of heart failure than cholesterol. It destroys the endothelial cells that line our blood vessels, causing them to commit "mass suicide"(apoptosis). Here is the study.
http://www.mendeley.com/research/increased-number-apoptotic-endothelial-cells-bladder-interstitial-cystitis-patients/
There can be no doubt that homocysteine plays a large and devastating role in the autoimmune process. In my opinion, there is only one way to control it. Homocysteine needs B12 to be properly recycled in the body. The absorption of B12 into our cells (not just blood level through supplements) is completely dependant on these missing enzymes.( I have posted a study to confirm this). These enzymes can only be replaced through diet. I have seen one remarkable recovery after another by simply healing the GI tract and replacing these enzymes. Allowing homocysteine to destroy our blood vessels while we take drugs to mask symptoms will literally be the death of us.
Quiet, I won't be able to research much for awhile. I am in Denver doing some speaking engagements on my book. I had a day off yesterday, but a really full schedule the rest of the week. In fact, I'm not sure when I will get a chance to post next. I hope you feel better today and are able to turn this around. I believe you can.
I had a really difficult time trying to sleep last night with that high pitched tone in my head....grabbed a cat and preferred listening to her purrring. :) Finally slept sometime around 5:30 am til 1. Called the neurologist and he will see me tomorrow 9:15 am. I took 2 Advil already to avoid getting to the level of pain I had yesterday.
I will put together some history for the Dr. and include what I have posted here and request the blood-work mentioned. Make a note to get copies of his tests for my files, etc.
I feel really dehydrated so I will be sipping Gatorade. Water doesn't quench my thirst. Not sure I have Gatorade...Might have to mix my own (google pedialite recipe), I substitute Molasses (for potassium) or honey, I do not use white sugar. It is the electrolyte mix that counts for hydration.
And then I am going to lay down again, My Best to All.
You are having some really weird symptoms. First of all, has anyone checked your adrenal glands. The buffalo hump that you speak of can come with excessive production of cortisone ie, cortisol.
Also, the dehydration that you keep mentioning is of concern I believe. There may be some type of pituitary involvement that is affecting the hormone levels in your body which in turn can affect the fluid balance. I would ask that these things be checked into.
Also, weakness can tag along with the other symptoms of which you speak. Also, have you ever been checked for RTA or renal tubular acidosis. This can affect your strength and also the potassium/sodium balance in your body. Another blood test that might prove necessary. Keep on bugging the doctors cause I would bet you have something going on that they have not nailed yet. Good luck and keep us posted. Irish ;D
Irish..I am 99.99% Gut instinct convinced that something else is the problem.
I have been on antidepressants for years. I did not go to the Dr. at that time for depression, I went shortly after the birth of my son because my arms were weak and my hair was failing out, including a center strip of pubic hair...which in 22 years has not grown back.
Back then of course I was so ecstatic to have my son, that I just took the drs. advice. And of course who had a computer at home then??
Anyway, the visit to the neurologist was inconclusive, as the tests performed to date are normal. So he wants me to keep a diary and I will see him in 4 weeks and he wants me to call if anything happens.
He brought up the diagnosis of depression and I was really upset. So I related to him what my therapist and I discussed (she takes copious notes and is the best documented source. She has been seeing me for years and is witness to my decline) She is NOT convinced my symptoms are from depression...and it was she and the Dr. she works with that finally sent me back to the MD.
To restate: I am living in a new area with better medical care. And am getting a new PCP and want to go to an Endo.( I now have anti-bodies/ thyroid) And recently todate have 3 females in family with thyroid issues. I just do not want to overwhelm a new Dr. and of course my experiences have jaded my view of MDs .
My positive thoughts have been: I am not this disease: it is only one facet of who I am.
I pray to have an open heart and an open mind.
In regards to the "buffalo hump" I thought I read somewhere that a buffalo hump has to do with adrenal gland function...don't know if that's true or not..................headaches can be a sign of dehydration also.
Quote from: engy on November 20, 2011, 01:14:05 PM
I'm sorry I do not have any answers but I have had the same headache as you have just described for 5 days. :'(
I hope you get some relief. No pill has helped mine.
I have no headache history.
Good luck, Carie
Hi, Carie
This is a stab-in-the-dark diagnosis, but I'm wondering if you have now got your blood pressure up, and the headache is from high or higher blood pressure, after you went on the high salt diet. If you can check it yourself, that would be good.
I used to have high blood pressure, and did have headaches that seemed related.
Just sayin'
Soycoffee
Thanks, That's a good thought. I do check my blood pressure & it's still low but almost normal.
My headache is mostly gone so I think I was fighting off a virus but I have also been getting them when my eyes get really dry.
Carie