posted
I've been living with Lyme for 10 years now (undiagnosed until April 07) and I've never experienced pain like this. I've had kidney stones and given birth. Those things didn't make me cry, and I'm lying here with tears rolling down my face, even though I feel like a dramatic fool for it.
My arms feel like fire is crawling under the surface of my skin. The pressure in my head is so great that it *hurts* - not like a headache, but like my brain is too big for my skull. It THROBS and I can hear my heartbeat in both ears, all the time. I have my usual symptoms - slight facial palsy, tingling in face, hands and feet, pain in knees, hip, between ribs, memory trouble and blurry vision with halos around everything. That's a typical day for me and I accept that every single morning.
This pain started when I started Ceftin and has been *constant* for two weeks. I feel like I'm losing my mind. I feel grumpy and desperate and crazy and frustrated and angry and honestly, like I should be in the hospital under someone's care. I feel like I'm going to stroke out.
I see Dr. C in MO, and I'm waiting on a call back from his office. I have Darvocet from my GP (who told me last time I went that Lyme patients are classically drama queens), but if I take that I'm so out of it I can't drive, and I have a five year old, so I have to drive. I have a hard time believing that the Darvocet would work on this anyway, because it's not PAIN, it's burning.
If you have these two symptoms, burning under your skin (not at touches, just all the time) or huge throbbing pressure in your head, please please tell me what you know and what's helped you.
Am I having sx of a co-infection? Dr. C said we should start treating those as well. Does Ceftin treat them? Am I herxing from Babesia or something?
I'm desperate for anything to work. I've even tried slapping my arms to see if some stimulus would curb the burning. Of course it didn't work.
Thanks in advance, guys.
Posts: 91 | From East TN | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey*)!)* very nice to see you, SarahL*)!!!!
Wish it was for better reasons- That sounds like one HECK of a Herx!!! Makes sense it would be with Ceftin re your skull- I had identical-ish sounding head herxes- but with FLAGYL- just like your skull is about to burst through your head and throbbing like a jackhammer- AGH!!!!!!!!!!! And worse head pain than I had ever ever had- Glad when they passed- I hope yours pass soon!!!
BUT Ceftin side effects are as follows and there is a special warning for
headache coupled with a skin RASH-
the skin BURNING may be your bodies version of this- so I would have this checked out at a doc in the box or with your doctor asap!!! WITH capitalized by me-
Cefuroxime side effects
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Call your doctor at once if you have any of these serious side effects:
diarrhea that is watery or bloody;
fever, sore throat, and headache WITH a severe blistering, peeling, and red skin rash;
seizure (black-out or convulsions); or jaundice (yellowing of the eyes or skin).
LESS serious side effects are more likely to occur, such as: nausea, vomiting, diarrhea, stomach pain; headache, dizziness; fussiness or crying (in children); sleep problems (insomnia); or vaginal itching or discharge.
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Well, I talked to Dr. C's office and they didn't seem concerned. They seemed annoyed that I'd called. *sigh* It's bad when even the LLMD's nurses are unsympathetic and impatient. She acted like I should have known that new, horrible symptoms could be just a herx.
I've actually asked my husband to make sure I'm alive in the mornings before he leaves for work. Sounds paranoid and dramatic, I know, but my head is THAT bad. It doesn't hurt like a headache. It hurts like massive pressure inside my head. It's definitely different than a headache, or even a migraine.
The burning under my skin is the worst. I can't get away from it and it never, ever stops.
Nurse told me to stop abx for a few days, which I will, but if it doesn't go away, who knows what they'll tell me. I'm 10 hours away from them. What could they even do if something got worse?
Thanks for responding, hon. -Sarah L
Posts: 91 | From East TN | Registered: Mar 2007
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posted
I had this kind of headache /head pressure from Larium. Couldn't believe 1 little pill a week could cause so much pain. So sorry your going thru it - wouldn't wish it on anyone!
I did however recently get relief from a herx headache from Sarsparilla - (2) 450mg. Binds endotoxins from die-off. Got mine at GNC I think.
Buhner recommends it & I am very pleased with it.
Supposed to have 2 hrs no meds or herbs on either side of taking it. I took mine at bedtime and headache lifted before I fell asleep. Hope this helps!
Posts: 176 | From Tenn | Registered: Jul 2004
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posted
Sarah - That burning is brutal! Makes natural child birth & kidney stones cake!
My description was blowtorch - started as 'sunburn' but my dx was MS & Fibro and pain is just part of it so I didn't seek medical help until the torches became unbearable.
Luckily, I tried a new doc and got the correct dx (in 10 minutes!) My LLMD says that it is irritated nerves and they need to settle down to heal so I have Lyrica. This and Lamictal are the only pain/neuro meds that I have ever taken that took care of the symptoms without side effects other than being able to sleep - (side benefit!) The addition of the Lamictal got rid of the migraine strength headache that I had for over 2 yrs - few meds touched it that didn't knock me out and then what's the point. Whether it is the abx doing the job or the settled nerves, my dexterity and feeling have improved.
Please pursue the side effects of the other meds - what if it isn't a herx?
You are NOT whining. I think people with Lyme endure far more pain because we are told it isn't 'real' and we just get used to living with it. 'They' would be running to the ER if 'they' spent a single day in our bodies! (rant over - really hate seeing someone feel that pain!)
Happy Healing - Robin
Posts: 47 | From morgantown, wv | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
How you describe your head pressure is my worst symptom. It is not so much "pain" as it is intense weightiness.
My head feels like an over filled pastry bag that feels like it is just needing to ooze out all over.
I always think that everything inside is about to burst and that I am going to stroke out. Very, Very scary.
The only relief that I find is through klonopin and rest (napping), or klonopin and sleeping at night. Often when I wake up it is there again.
I haven't been treated for Lyme yet. Just dx'ed and waiting for appt.
Klonopin was perscribed by my regular MD. Hope you find some relief, best to you.
I should also add that while this head pressure is very intense, scary, with a stroke like feeling, I have been having this symptom for 15 years on and off and have not had a stroke!!!
Posts: 3975 | From usa | Registered: Aug 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
whenever I herx I get severe burning sensations all over my skin - I would say therefore it is a herx. As Dr C would say bak off AB's detox (plenty of water with lemon etc) and let the herx clear - did he give you diamox for ther pressure???
As you know new symptoms come with each herx then go - so please keep sight of the fact that this is a good sign, you are creating loadsa toxins from the die off - but again as Dr C says back off and let the herx clear.
Im surprised at your response from the clinic as they are all usually all so wonderful - perhaps speak with a different nurse next time as Dr C would be so upset to know you are upset.
It will get better and in my opinion all though its hard at the moment you are with the best - keep communicating with Dr C and if you are still unsure call again and ask if you could book a telephone consuly asap with him.
posted
Am I having sx of a co-infection? Dr. C said we should start treating those as well. Does Ceftin treat them? Am I herxing from Babesia or something?
=================
I would also say it's a herx.....but it COULD be from the Ceftin itself. Keep that in mind!
Ceftin will not treat coinfections, so you're not herxing from Babesia.
Hang in there......you are not a drama queen!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Hey, So sorry that you are in this much pain.
I have exactly what you do.
I have the burning ALLLL the time but the head pressure starts from a herx. The ears, eyes also throb and burn. I am in one now.
I also see Dr C.
They are usually kind.
Dr C has told me {don't know about others- TUTU??} to DC when the herx gets this bad.
I take MANY WARM baths with epson salts.
Get some Batherapy, you can find it anywhere. Soak in a warm tub for as long as you can.
I have learned when it moves from burning to being on fire, do WHATEVER you can to get out of it.
Maybe something that could help soak up the die off like Chorella would help. Charcoal, Questran,
Drink tons of water.
Please email me if I can help you in anyway.
Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Augh. I know what you mean about the pressure in your head and being able to hear your heart beat in your head. I really, really hate that and it worries me. It's been bad enough sometimes that I can't sleep because I hear it in my head while I'm trying to sleep. Not fun.
And I also know the feeling that you feel sick enough that you should be in the hospital. I've felt many times like I should be at the hospital. And then when I think of going to the ER, I think it would be a waste of time and money because what would they be able to do? They probably don't know as much as we know about the disease.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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quote:Originally posted by disturbedme: And I also know the feeling that you feel sick enough that you should be in the hospital. I've felt many times like I should be at the hospital. And then when I think of going to the ER, I think it would be a waste of time and money because what would they be able to do? They probably don't know as much as we know about the disease.
Absolutely correct!!
BJG is right....the nurses are usually very kind. There is one there that "has her days." She needs to lighten up a bit.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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My arms feel like fire is crawling under the surface of my skin. The pressure in my head is so great that it *hurts* - not like a headache, but like my brain is too big for my skull. It THROBS and I can hear my heartbeat in both ears, all the time. I have my usual symptoms - slight facial palsy, tingling in face, hands and feet, pain in knees, hip, between ribs, memory trouble and blurry vision with halos around everything. .
I don't know about the burning skin, but the horrific head pressure, heartbeat in your ears (i.e., pulsatile tinnitus) and blurry vision sound like intracranial hypertension (ICH; aka pseudotumor cerebri). You may want to have an ophthalmologist look at your optic nerve heads to see if they are swollen (papilledema). If it's ICH, then CSF can be drained to temporarily relieve the pressure. ICH is often associated with venus sinus stenosis. It's not clear yet if the stenosis causes the ICH, if the ICH causes the stenosis, or both. There's some indication that it's both:
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