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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Not CH - Need help
        
(Message started by: jminmilwaukee on May 6^th, 2005, 8:40am)

Title: Not CH - Need help
Post by jminmilwaukee on May 6^th, 2005, 8:40am

All,

I need to tap the expert advice of the CH community to help diagnose this girl. I thought this would be the place for mystery illness and misdiagnosis. Please see the following and let me know if you have any insite.

Thanks - jmin

Active 16 yr old female with a history of exercise induced asthma -
diagnosed at 13/14 yrs old. Meds - Flovent (4 puffs 2xday) Serevent (1
puff 2xday) Albuterol inhaler as required. No surgeries, no broken bones
Has mild case of GERDS was scoped at (hospital) several years age.

3/17 - 3/20 Augmentin 800 2xday *pretreatment for sinus chronic sinus
infections from flying*

3/19 - 3/29 South of Playa Del Carmen, Mexico

3/27 - 3/31 Augmentin 800 2xday *pretreatment for sinus chronic sinus
infections from flying*

3/25 - Took a trip through the jungle to cenotes and caves she was bit
by mosquitoes. Also acquired other bites (unknown origin) swelled to
the size of a mechanical pencil eraser, itchy, no puss but hard to the
touch. These bites did not leave until 4/12.

4/7 severe asthma attack ambulance to ElmBrook given steroid pack for 7
days.

4/8 Dr. (deleted) asthma specialist - changed drugs from flovent 4 puffs
2xday and serevent 1puff 2xday to Pulmicort 4 puffs 2xday and Floradil 1
puff 2xday.

4/8 developed headache, nauseousness (no vomiting), stiffness in neck,
lethargic, glassy eyes, exhausted, can't concentrate or remember
homework. **Ongoing**

4/13 ongoing headache gave 600 mg tylenol 3xday no change. Stopped
steroids due to headache. 1 pill left.

4/14 Contacted Dr. (deleted) (asthma specialist) suggested we place her on
migraine meds. Last steroid not given due to headache.

4/14 (Doctor deleted) placed her on 2 Tylenol migraine pills until she has
her appointment on 4/15. No change.

4/15 Appointment w/(Doctor deleted)headache scale an 8. Gave her 100 mg of
imitrex headache worsened. Requested CT scan at (Clinic). Scan was
negative. Gave (girl) a total of 5 Midrin capsules. No change.

4/16 100 mg of imitrex @ 7am and 2 capsules of Midrin beginning @ 11 AM
taking a total of 5 within 6 hours **Headache improved to a painscale 2
around 3PM** Worsened to painscale 8 around 9 PM.

4/17 100 mg imitrex @ 8am no change. Midrin took 4 pills no change in
status. Contacted (Doctor deleted) (on-call) to discuss options and refill
imitrex if appropriate. Refilled imitrex took 100 mg + 600 mg of advil
@ 3:45 pm no change in status.

4/18 5 AM & 7AM 100 mg of imitrex & 600 mg of advil no change. OFF all
migraine meds. Appt with I/M to review for migraines - conclusion no
migraines ** giving 600 mg of Ibuprofen 3 x day from this point
forward** Headache level 7/8. Appt with Asthma specialist to determine
if med alterations could cause the headache - conclusion no

4/19 Dosing the same headache level 10 went to (Clinic) ED blood work-up
+ sent out for lyme & rocky mt fever (results in 4/25) Gave IV
w/cocktail headache the same gave 2 mg of morphine headache went to a 6.
Taste disturbances started. ED MD wanted to do a lumbar but he agreed
it could probably wait until Thur/Fri. Suggested we see a PedNeuro/ID
specialist and that this is probably viral. Ability to study improved.

4/20 Contacted PA @ Q/Med to discuss options to see a PedNeuro and ID
specialist at (Hospital). She refused to refer her until she comes into
her appt on 4/22. Suggested that if it gets worse to go to the ED.
Headache level 5/6 dosing the same added 1 Excedrin migraine with 2 200
mg ibuprofen @ 7am followed by 3 200 mg Ibu @ noon and 7pm. Has
experienced a slight fever at night.

4/21 Headache level 5 went to 7/8. Night sweats.

4/22 Appt w/(Doctor deleted). She contacted (Doctor deleted) (Clinic ED) and (Doctor deleted) (ID). (Doctor deleted) suggested an MRI followed by a lumbar tap. Gave
Britt several drugs to take over the weekend. Encouraged more salt due
to low blood pressure. Monitor what you eat for headaches.
Administered 40 mg of Replax w/1 Excedrin migraine & 200mg of Ibuprofen.
!:00 40 mg of Replax. 7:00 PM 2 Midrin, no change.

(continued)

Title: Re: Not CH - Need help
Post by jminmilwaukee on May 6^th, 2005, 8:41am

4/23 2.5 mg of Emerge @ 8:30 am & 11:00 am. 1 midrine @ 2:00 and 2
Midrine at 7:00 PM, no change. 1 hr massage at 1:30 pm by an RN
therapist. No change.

4/24 1 Excedrin 400 mg of Ibuprofen at 8:00 am & 2:30 pm. No change.

4/25 MRI negative. Blood work appears to be normal (per verbal
discussion). Appt w/Neuro (Doctor deleted) suggested that she not be placed
on Midrin except at the onset of a headache. He believes that it is
viral (which will run its course) or a migraine. The medicine should
give her relief. (Girl) did forget to mention the following two changes
which are: 4/24 & 4/25 vision saw large color paths for 4-5 seconds and
increasing tiredness. 1 dose Hydrocodone 7.5 - 750 Tab @ bedtime.

4/25 Her headache did increase during her soccer game yesterday, level
9. 1 dose Hydrocodone 7.5 - 750 Tab @ bedtime. No change in status.

4/26 Status the same. Took 600 mg of Ibu 2xday + 1 Hydrocodone @ night.
Was very nauseous at school, lethargic, drowsy, can't remember school
work, headache increased to feeling as tough it was pounding (level 10)
from 10:30 - 5:00 pm. Almost didn't go to soccer due to stomach and
headache. Chills beginning around 5:30 pm.

4/27 OFF all Meds until we determine how to proceed. Headache level @
7:38 AM was a 6. Admitted to (Hopital) via ED. Lumbar tap normal SFP
29 slightly high. Administered Metaxalone that night. Headache level 8
no change. Sweats, cough, nauseousness on & off during day. Ongoing ear
pressure.

4/28 Neuro, ID and Pain Mgt Consults. AM headache level 6 quickly rose
to 7/8. Cryptococcus lab NEGATIVE. Administered Skelaxin 800 mg @ 8:00
AM 4:00 PM and 25 mg Tramadol @ midnight. Sweats & nauseousness on & off
during day. Ongoing ear pressure & cough.

4/29 Headache level 6 went to level 8 within 10 mins of awakening. 3:20
PM dosed with 25 mg of Diclafencal. MRV ruled out dural sinus
thrombosis. 2 additional antigen tests will be resulted on 5/4. Ongoing
day/night sweats. Dosed with 50mg Tramadol @ 7:25 PM, 50mg Dicofenas @
8:30 PM, 10mg Amitriptyline 7:00 PM.. Headache level 8 at night sharp
pain in frontal lobe for intermittent periods. Released from Children's.
Cough, nauseousness on & off during day. Ongoing ear pressure.

4/30 Day/night sweats headache level 7/8. 50mg Diclofenac am/pm, 50mg
Tramadol @ 10:00 am & 3:30 PM, 10mg Amitriptyline 7:00 PM. Acupuncture
at Noon headache level 5.5/6. Chinese herbs direction 4/5 pills 2xday.
Comprised of dang gui, chuan xiong, du huo, zhi chuan wa, fang feng,
qiang huo, qaoben, man jing zi, bohe, bai zhi, wang bu liu xin.
Administered 4 pills only. Intermittent sharp pain in frontal lobe. At
store began sweating (t-shirt was wet), pale, felt hot to the touch
(forehead) compared to mine, nauseous. While sleeping she had a wet
t-shirt from the sweats. Headache level 5.5 Nauseousness on & off
during day. Ongoing ear pressure & cough. Did homework & slept most of
the day.

5/1 Headache level 5.5 50mg Diclofenac am/pm & 10mg Amitriptyline @
6:30 PM. Chinese herbs direction 4 am & pm. Headache level 5.5
Nauseousness on & off during day. Ongoing ear pressure & cough.
Day/night sweats & cough. Did homework and relaxed.

5/2 Headache level 5. Administered 50mg Diclofenac am & 4 Chinese herbs.
Holding on meds until I consult w/PCP. PCP consulted w/(Doctor deleted) on
the plan. Agreed to include antibiotics. 5:30 PM administered (2)
250mg Zithromax & (2) 600mg Mucinex, 6:45 PM 20mg Amitriptyline (assist
w/sleep), 50mg Diclofenac. Went to soccer game didn't play.

5/3 Headache level 6 7:00 AM 250mg Zithromax, (2) 600mg Mucinex, 50mg
Diclofenac & 4 Chinese herbs. PCP continue on all meds except for
vitamins and herbs. 6:30 PM (2) 600mg Mucinex, 20mg Amitriptyline
(assist w/sleep & pain), 50mg Diclofenac. Headache went to a low 5.
Soccer practice didn't play toched the ball a few times was at the BA
field. Headache started to build to the climax of a n 8/9 on Thursday.

5/4 Headache level 7. 7:00 AM Zithromax 250mg, (2) 600mg Mucinex, 50mg
Diclofenac. 6:30 PM (2) 600mg Mucinex, 30mg Amitriptyline (assist
w/sleep & pain), 50mg Diclofenac. Food: Egg, melon, apple juice, milk,
ham sandwich, salmon, salad, applesauce, h2o melon. Headache level 6.

5/5 Headache level 8/9 More severe ear pressure. 7:00 AM Zithromax
250mg, (2) 600mg Mucinex, 50mg Diclofenac, 4 Chinese herbs. 6:30 PM (2)
600mg Mucinex, 30mg Amitriptyline (assist w/sleep & pain), 50mg
Diclofenac, 4 Chinese herbs. Acupuncture session. Food 2 eggs, toast
w/cinnamon sugar, melon, juice, turkey sandwich, strawberries, jicima,
little Debbie cake.

Title: Re: Not CH - Need help
Post by E-Double on May 6^th, 2005, 9:04am

I wish I knew brother, and I will certainly try to research!

2 tings did jump out at me...not so much regarding HA or symptoms but meds.....2 different triptans within 24hrs.....and combinations of NSAID's...also not good.

She was tested for Lyme's..

Was she tested for Epstein-Barr ????

Title: Re: Not CH - Need help
Post by TxBasslady on May 6^th, 2005, 9:11am

Jeff,

Encephalitis?

The headache is what makes me think this....

....maybe Floridian will come along....he's a walkin med book!

Poor child! She's been run thru the mill.

Lots of vibes for her.....bless her heart,

Jean

Title: Re: Not CH - Need help
Post by nani on May 6^th, 2005, 9:20am

I assume they ruled out meningitis and malaria?....

I'm sorry she has to go through this. She's in my thoughts and prayers. hugs and love, nani

Title: Re: Not CH - Need help
Post by jminmilwaukee on May 6^th, 2005, 9:21am

Thanks E and Tx - She did get a negative result from the Epstein Barr although the test showed that she was exposed to "something"?

Encephalitis was also ruled out.

The girl is the daughter of a friend of mine and she has commited to stopping all meds if things do not improve by Sunday as the meds have so far been useless.

Title: Re: Not CH - Need help
Post by miapet on May 6^th, 2005, 10:36am

I have to go with nani .. .the stiff neck makes me think of menengitis too.
*positive light and energy*
miapet

Title: Re: Not CH - Need help
Post by rickyshot on May 6^th, 2005, 11:22am

OMG poor soul. I have been through similar without fevers. The fever worries me. Something viral is going on triggering complicated migraines. That is my take. Virus's are scary things as there are so many not identified so you end up with a diagnosis of Chronic fatigue or fibromyalgia-translation know it is some form of virus but what the hell is it????
When my oldest son was 13 he had mono like symptoms with low grade fevers, maliase, swollen glands and tiredness. They never found out what it was but it lasted for two years and is gone now. He is 23. Like I said virus's are scary things.

Title: Re: Not CH - Need help
Post by Karla on May 6^th, 2005, 8:31pm

I have to agree with a couple of others either Encephalitis or menigitis. I will be praying for your daughter. I do hope she recovers soon!!

Title: Re: Not CH - Need help
Post by Mr. Happy on May 6^th, 2005, 11:05pm

Wouldn't even pretend to have a clue, but......

Quote:

3/19 - 3/29 South of Playa Del Carmen, Mexico
3/25 - Took a trip through the jungle to cenotes and caves she was bit by mosquitoes. Also acquired other bites (unknown origin) swelled to the size of a mechanical pencil eraser, itchy, no puss but hard to the touch. These bites did not leave until 4/12.

The whole Mexico/Jungle/bites thing jumped out at me. Not to mention the amount of futile drugs being pumped into this kid. Wish her luck, soon. Wow.

Title: Re: Not CH - Need help
Post by sandie99 on May 7^th, 2005, 2:06am

*Wishing for a quick recovery to her*

Sandie

Title: Re: Not CH - Need help
Post by Redd715 on May 8^th, 2005, 1:53pm

I'd rule out meningitis as well. I had it at age 14. There was no outbreak of it at the time, in fact I was the only case in the area.

Title: Re: Not CH - Need help
Post by jminmilwaukee on May 9^th, 2005, 3:42pm

Meningitis and Malaria have been ruled out. She is still no better BUT they have found fluid buildup in the inner ear that can be attributed to a viral infection of some sort.

Seems the obvious have been looked at including the whole gammet of local ailments. I have suggested she call a few clinics and hospitals local to the area in Mexico that her daughter was visiting when bitten.

Thanks again for your input here. Any Central Americans online here that may heve seen this?

Jeff

Title: Re: Not CH - Need help
Post by E-Double on May 9^th, 2005, 3:58pm

maybe some info here......

http://www.cdc.gov/search.do?action=search&queryText=central+america

Good luck!!

Eric

Title: Re: Not CH - Need help
Post by jminmilwaukee on May 10^th, 2005, 8:25am

Thanks E-Double,

Sent her the link and it looks as if Dengue fever (They were in a hot zone) or Malaria are good candidates. You would think any doctor with a brain would look at the tropical bites and immidiatly rule these out would you not?

Although it sucks to see her go through this it is also an eye opener as to the misdiagnosis (or lack of diagnosis) that occures in everyday medical practice.

More to follow.

Jmin

Title: Re: Not CH - Need help
Post by ozzy on May 11^th, 2005, 2:19pm

More stuff on the a whole bunch Tropical Diseases:

http://www.skylarkmedicalclinic.com/tropical.html

See particularly, Dengue as it has been mentioned already, also Legionnaire's Disease (extremely rare), Rocky Mountain Disease.

Weird. The night sweats seem to be significant, but with Malaria there would be some delirium as well as continuous high fever.

Keep us posted.

Ozzy

Title: Re: Not CH - Need help
Post by jminmilwaukee on May 13^th, 2005, 11:14am

GREAT NEWS ALL!!!

After spending time with a bunch of egotistical Docs who could not admit that they were not qualified to handle this case (two of which wrote this off as teenage depression brought on by stress), she was brought to the top tropical infectious disease expert in the area.

After 18 simple tests the initial conclusion is encephalitis AND meningitis with the possible mix of a rare form of malaria.

Had she been properly diagnosed in the begining, she would be fine by now. The specialist also attributes her ongoing headaches to (get this)....overmedication!!!!

Thank you for you r words of support and expert input (all of which have been passed on to the girl and her mother).

Jmin

Title: Re: Not CH - Need help
Post by Karla on May 15^th, 2005, 3:31pm

I will be praying for your daughter. What is her name? I didn't catch it. If you could pm me I would like to pray for her specifically. I am so sorry you are going throuigh all this. My son had menigitis when he was younger. I recognized some of the symtoms. It took them almost a week before he was correctly diagnosed because he had a combination of disorders like your daughter. Remember to take care of you also. Seeing your child come close to death is a terrible thing. I had a mental breakdown after wards when he got out. So please make sure the family is ok to.